Newly diagnosed and totally overwhelmed

[lizcoop]

Hello - I am 55 and was rushed to hospital the week before last with DKA. I was told I now have type 1 as a result of a virus and to say my world has been turned upside down is an understatement. I feel terribly depressed and like I am at the foot of a mountain I just don't want to climb. I know it will get easier and I am managing to inject myself with the basal and bolus doses and eating a very low carb diet to keep my BG in range (it's at 90 percent in range atm so proud of that) but it's knowing that once my 'honeymoon period' ends that will all change again feels so challenging to deal with and although I feel great at the moment, knowing I will probably feel rubbish again because of this again makes me feel so down. I know children deal with this etc but I'm just struggling. Anyway, that's it. If anyone has words of encouragement that would be nice

 

[Nicola M]

I could sit here and tell you everything is going to be sunshine and rainbows and that’s probably what you want to hear but that’s also not really what it’s like and I wish someone would have been honest with me as a teenager.

I’ve been diagnosed for 26 years (when I was 1) and although with an insulin pump and CGM things have gotten better for me it’s still not easy, your insulin needs can change with the drop of a hat and given that you’re in the honeymoon period yours will more than likely change a lot.

There are still times when I feel absolutely rubbish and I’m having a bad blood sugar day but there are also times where I’m 100% in range and feel amazing, to me it’s all about being kind to yourself and remembering that you’re only human you’re not going to get it perfect all of the time and that’s okay you can only try your best.

You’ve done a good thing already by joining this forum, there’s so many amazing people here who have some great advice and experience and remember you can always contact your diabetes team they’ll have seen plenty of people in your position and will have great tips to help.

 

[Grant_Vicat]

Hello - I am 55 and was rushed to hospital the week before last with DKA. I was told I now have type 1 as a result of a virus and to say my world has been turned upside down is an understatement. I feel terribly depressed and like I am at the foot of a mountain I just don't want to climb. I know it will get easier and I am managing to inject myself with the basal and bolus doses and eating a very low carb diet to keep my BG in range (it's at 90 percent in range atm so proud of that) but it's knowing that once my 'honeymoon period' ends that will all change again feels so challenging to deal with and although I feel great at the moment, knowing I will probably feel rubbish again because of this again makes me feel so down. I know children deal with this etc but I'm just struggling. Anyway, that's it. If anyone has words of encouragement that would be nice

First of all I want to congratulate you on what you have achieved already, in spite of the very real emotional package which comes with such a dramatic change. I have always felt that it is much harder to deal with diagnosis once you have experienced years of life without it. It is easy to think that perfect control is required at all times. Non-diabetics don't have "perfect control" when dealing with eg a virus. Illness and stress can cause sudden rises in blood glucose levels and dealing with this varies from person to person. I reckon that when your honeymoon ends you will deal with this well. I hope the rubbish is cleared quickly!

 

[LondonMama]

I'm the parent of a T1 teenager, and this is exactly how she feels (and I feel some of, on her behalf). I think it's unbelievably huge, and simply not digestible - would urge you to go easy on yourself and practice any kind of self-care you can. While children do deal with it, they (hopefully) have unwavering support from their parents, and the wider sympathy of everyone.

Most people have no idea how relentless diabetes management is, and you might need to explain to them so that they can truly empathize.
And at the very least, give yourself a break, wrap up in a duvet and have some time to "feel sorry for yourself". Just eat well and stay hydrated while you do.

I also think the Reddit forums are really supportive.

 

[Juicyj]

I was exactly the same at age 37 years, my world fell apart, I remember coming on here to get support and a former mod on the site helped me massively which encouraged me.

Here's what I can tell you, it is hard to deal with, there's no denying it's something none of us want, we would all love to live without the t1d... however here's what will make it easier for you, firstly read the post on newly diagnosed t1d's and what they need to know - lots of words of wisdom there, it's not your fault in any way, there are many emotions attached to diagnosis and some associate it with the 7 stages of grief, which does resonate, so fear, denial, bargaining, etc to the point of acceptance, it's at the stage of acceptance that dealing with t1d does become alot easier. My key advice is knowledge, learn as much as you can about it, being the master of this is vital and so is support, in whatever form that takes, your nurse, here on the forum, with a local diabetes group.

Just take it one day at a time, if you have a bad day accept it as it is and don't beat yourself up, we all have them, but most importantly just be kind to yourself.

Wishing you well and please PM if you need any help

 

[himtoo]

Hi there @lizcoop ..getting diagnosed with type 1 diabetes is never easy but i think the older one is the more difficult it can be because there is so much realisation of the "lost life" that has been left behind. you have come to the right place though because we all "get it".
there is no such thing as a silly question so please do ask about anything at all.
as has been said above ..taking things one day at a time and trying not to stress about things when they don't seem to do as they did last time is the best advice i can think of .

 

[becca59]

Hi @lizcoop I was diagnosed @ 54 eleven years ago this month. Yes it is an absolute pain, it is relentless and there are good days and bad days. As @Juicyj says, at the end of a bad day forget it and start again afresh the following day. There is nothing you can do about it, just learn from it.

What I will say as someone diagnosed older is I believe I am much fitter than I would have been now. Having to think about everything I eat and drink and inject sure makes me think before putting unhealthy food In my mouth and I ask myself do I really need that. The answer is usually no.

 

[lizcoop]

Thank you all so much. I think I am still in shock from it all - nearly dying, my horrendous stay in hospital and of course the realisation that life will never be the same again. I have taken the rest of this week off work to try and digest things. I do have a couple of questions if you don't mind. My eyesight has changed eg, I wear reading glasses but never needed them to use my computer and now I do - one diabetes nurse advised me that this will self-correct and I shouldn't get a new prescription until that happens - does that seem correct? Also, I am really struggling to understand bolus dosing. At the moment I don't bother at all if I'm just eating, say a boiled egg or a chicken leg but when I have my main meal which is a massive salad of green veg plus some protein and one or two new potatoes for example I take 4 units (hospital has given me 4/4/4 to take for now at each meal). Let's say I wanted a kitkat for pudding, which has 25g carbs - do i have a further 2.5 units on top of the 4 units I already have? Do I subtract the amount of protein (2.9g) from the 25g so would have 2.3 further units? I am rubbish at maths/understanding this! Currently I am just sticking to a low carb diet which makes me feel great and my glucose is 92% in range so won't be having chocolate any time soon but would be helpful to know. Thank you so much.

 

[himtoo]

Thank you all so much. I think I am still in shock from it all - nearly dying, my horrendous stay in hospital and of course the realisation that life will never be the same again. I have taken the rest of this week off work to try and digest things. I do have a couple of questions if you don't mind. My eyesight has changed eg, I wear reading glasses but never needed them to use my computer and now I do - one diabetes nurse advised me that this will self-correct and I shouldn't get a new prescription until that happens - does that seem correct? Also, I am really struggling to understand bolus dosing. At the moment I don't bother at all if I'm just eating, say a boiled egg or a chicken leg but when I have my main meal which is a massive salad of green veg plus some protein and one or two new potatoes for example I take 4 units (hospital has given me 4/4/4 to take for now at each meal). Let's say I wanted a kitkat for pudding, which has 25g carbs - do i have a further 2.5 units on top of the 4 units I already have? Do I subtract the amount of protein (2.9g) from the 25g so would have 2.3 further units? I am rubbish at maths/understanding this! Currently I am just sticking to a low carb diet which makes me feel great and my glucose is 92% in range so won't be having chocolate any time soon but would be helpful to know. Thank you so much.

the advice from your nurse regarding eyesight is correct. The eyes do change due to reducing and managing levels of glucose following a diabetes diagnosis,.

as for bolus dosing that is a much more difficult question to answer. as we are all individuals there is no 1 dose that fits us all and your nurse ( along with all health care professionals) start out using basic dosing principles and pretty much apply them to everyone.

from the info you have provided the nurse has given you a carb ratio of 1 unit of bolus per 10 carbs. so this means that in theory you should be attempting to eat 40 carbs at each meal..... but if you are NOT doing this ( eating 40 carbs per meal ) and you are achieving the very good time in range results it would suggest that your insulin to carb ratio needs adjusting.

YOU MUST speak with your health care team regarding this as we cannot hand out actual medical advice.

your dosing suggestion for an additional Kit Kat is correct based on the information you provided BUT as stated by me just above you really need to consult with your Diabetes team , and no you would not subtract protein from carbs in a bolus dose.

In addition, in the early months following a diagnosis your body may be still producing some insulin which does cloud the picture as well.

 

[lizcoop]

Thank you - I will speak with my endo on Monday when I have my first follow up appt. about the bolus doses. Good to know about not having to subtract the protein. One less maths problem to solve!

 

[himtoo]

Thank you - I will speak with my endo on Monday when I have my first follow up appt. about the bolus doses. Good to know about not having to subtract the protein. One less maths problem to solve!

one additional thing i just thought of ... getting a copy of the Book "Think Like A Pancreas" could be beneficial

 

[lizcoop]

I am in the middle of reading that book right not!

 

[CheeseSeaker]

Hi @lizcoop - welcome to our (not so great) little (ok - actually quite big) club.

Sorry you had to join (it can be a real b*gger at times, and we all wish we didn't have it) - its not all sun and roses, but there is a way through all of it. Just means a load of change in the way you think about food and stuff, and a fair bit of learning.

90% in range is brilliant - not easy to do but you're learning as you go too. Things like a weak moment (involving cake and pizza, pasta etc etc) take a different bit of experience to know how it will hit you, and how you correct for it, but that comes with times (and mistakes).

A 'bit of a bad day' wont hurt you, but long term it will cause problems, so the more time you get to try a family birthday party etc, the easier it will be at the next event.

There are lots of technology now that can help you - ask for CGM (continuous Glucose Monitors, like Libre and Dexcom) if not already on them, and you can see what effect food has on your BG (and for how long).

Your diabetes team will help - some of the best information can be from others that have gone through the same thing - you can learn a lot that way, and help to return to a normal life.

I go in with the attitude of 'how do I do that?' rather than 'I can't do that because of' - and have a lot more fun - T1 has never stopped me doing anything (now 51 years in)

 

[lizcoop]

Hi @lizcoop - welcome to our (not so great) little (ok - actually quite big) club.

Sorry you had to join (it can be a real b*gger at times, and we all wish we didn't have it) - its not all sun and roses, but there is a way through all of it. Just means a load of change in the way you think about food and stuff, and a fair bit of learning.

90% in range is brilliant - not easy to do but you're learning as you go too. Things like a weak moment (involving cake and pizza, pasta etc etc) take a different bit of experience to know how it will hit you, and how you correct for it, but that comes with times (and mistakes).

A 'bit of a bad day' wont hurt you, but long term it will cause problems, so the more time you get to try a family birthday party etc, the easier it will be at the next event.

There are lots of technology now that can help you - ask for CGM (continuous Glucose Monitors, like Libre and Dexcom) if not already on them, and you can see what effect food has on your BG (and for how long).

Your diabetes team will help - some of the best information can be from others that have gone through the same thing - you can learn a lot that way, and help to return to a normal life.

I go in with the attitude of 'how do I do that?' rather than 'I can't do that because of' - and have a lot more fun - T1 has never stopped me doing anything (now 51 years in)

Thanks so much - that's good to hear. It feels like my life has kind of ended but I guess my old life has and my new one has begun. I am eating very healthily but I hate the way it has sucked the joy and spontaneity out of eating; that's hard to come to terms with.

 

[CheeseSeaker]

Thanks so much - that's good to hear. It feels like my life has kind of ended but I guess my old life has and my new one has begun. I am eating very healthily but I hate the way it has sucked the joy and spontaneity out of eating; that's hard to come to terms with.

I get that (honestly I do ) but there is light at the end of the tunnel (that there wasn't until the last few years).

We are moving through a HCL rollout (HCL is Hybrid Closed Loop - think of an artificial pancreas using a BG monitor, talking to a 'brain' and an insulin pump.

That means you tell it how much you eat and when, and it thinks about it and delivers the correct amount of insulin. If you need less insulin, it stops delivering any more, if you need more, it adds more till it gets the levels right.

Not perfect but 'almost' like having your pancreas back.
In the future Fully Closed Loop - where you 'eat and go' - currently nothing available unless you DIY (and thats not for the faint hearted) - thats where I am, but I've spent a long time getting it to work for me, after years of understanding T1 and what impacts my BG. FCL is coming, so that spontaneity is on the horizon - keep an open mind to what you Diabetes team tell you, and keep positive (we all have down days, just don't give up).

Just ate some left over christmas chocolate and a packet of S&V chrisps without doing anything - I love what I have now (but was 4 when diagnosed so not sure I remember anything better than 'now') - we've come on a long way

 

[Hopeful34]

Things like a weak moment (involving cake and pizza, pasta etc etc) take a different bit of experience to know how it will hit you, and how you correct for it, but that comes with times (and mistakes).

Some type 1's choose/find it easier to eat low carb or keto, others choose to have more carbs, but it's a choice, and shouldn't (in my view) be seen as a 'weak moment'. DAFNE course for Type1 is, after all, dose adjustment for normal eating. I don't want to derail the OP post, simply to give them hope (as a newly diagnosed type 1, that they can eat pasta etc.

 

[CheeseSeaker]

Some type 1's choose/find it easier to eat low carb or keto, others choose to have more carbs, but it's a choice, and shouldn't (in my view) be seen as a 'weak moment'. DAFNE course for Type1 is, after all, dose adjustment for normal eating. I don't want to derail the OP post, simply to give them hope (as a newly diagnosed type 1, that they can eat pasta etc.

Was meaning the difficult foods take a bit to learn how to deal with - I eat everything (though not a fan of Spam....or corned beef if I'm honest - and don't start my on Fray Bentos pies in a tin)...

Otherwise - Normal eating, and have done that even when in injections (before pump etc) - DAFNE makes a big difference to understanding how food is consumed and what values are - recommended for any diabetic even in advanced years of T1 experience - I learned a lot (after 30+ years)

 

[lizcoop]

Was meaning the difficult foods take a bit to learn how to deal with - I eat everything (though not a fan of Spam....or corned beef if I'm honest - and don't start my on Fray Bentos pies in a tin)...

Otherwise - Normal eating, and have done that even when in injections (before pump etc) - DAFNE makes a big difference to understanding how food is consumed and what values are - recommended for any diabetic even in advanced years of T1 experience - I learned a lot (after 30+ years)

haha - I used to love a Fray Benton pie. I really want to crack on with a DAFNE course so I know what I"m doing. I hate spam/corned beef too, lol!

 

[M80]

Hello
All over 40 usually - diabetic or not, end up with presbyopia which means reading glasses are needed. So although it’s true what your nurse said - expect to need reading glasses, but not because of your diabetes . Xx

 

[Marikev]

« I know children deal with this etc but I'm just struggling. Anyway, that's it. If anyone has words of encouragement that would be nice »
Sending many words of encouragement - was diagnosed at 68, while still teaching. You will get through this and in a couple of years time will look back and see how far you have come.
Have since retired, but still getting used to not having a set routine. Having to get up and show up and teach every day gave a shape to my then new type 1 routine. The principle offered to sign me off for a couple of weeks, but I needed to learn how to manage the condition for work. I only once had to go home early, when I had a yo-yo sugar day!
I couldn’t believe I had ended up with type 1 and asked a doctor in the emergency room if I would lose some more weight, eat more sensibly and take a bit more exercise I could quit the insulin. She deliberated a while and said «No!». A fortnight later I got a phone call from a professor at the hospital confirming what I had then worked out for myself that this was type 1.
By chance I had a holiday booked with my then 14 year old grandson , touring northern Europe, mainly by train, starting just a fortnight after diagnosis. I think otherwise I might have sat home, it was school holidays so I wasn’t working, overthinking my new situation.
I shudder now to think of the situations I ‘got away with’ on that holiday. I had a glucometer and two sorts of insulin and had received three renditions of what was obviously a standard warning from hospital staff about drinking alcohol, or rather not drinking alcohol. It was some months before I ‘dared’ to risk a drink of any kind, but fortunate that holiday was with underage grandson. So wine with meals and a bar in the evenings were not elements of that holiday.
Afternoon naps and regular meal times were!
I remember the realisation that spontaneity was being removed from my life. I am currently trying to get into the routine of a daily walk, for a while my DH insisted I kept to the roadways, rather than footpaths. But with a CGM and jelly babies, I am back trekking footpaths.
Make use of the tech and be kind to yourself. The DAFNE course will teach you some practical stuff and also give you a chance to meet others with the condition.
best wishes