Hi,
This thread has prompted me to engage after years just reading! To those saying close the thread I couldn't disagree more: honest, authentic discussion is vital on this subject. For me reading the realities of how serious this condition is focuses the mind. If you prefer a more rose tinted world and don't like this thread then don't read it... and you'll probably want to avoid several others at the moment that deal with the downsides!
And some of the "I just got on with it" or "you're not handling it well" comments from people who have entirely different diagnosis, medication (none needed) and testing regimes (none needed) and prognosis are bizarre to say the least!
@NoKindOfSusie I actually do find humour in many of your responses, (albeit of the black variety!) This is good and will help. Your posts and the feelings you are expressing I think are entirely reasonable, normal and in line with many newly diagnosed T1's; they certainly resonate with me. I can also empathise that your diagnosis has come at a particularly cruel age when you had figured out who you are and had the world at your feet (you still do btw). I was 37, so slightly luckier, but I still resented it as I could recall how care free life was just weeks before.
You're perfectly entitled and it is not unusual to feel how you do at this stage: it's a life changing diagnosis with potentially devastating consequences. Even the medicine needed to manage it can kill you! It's a very big deal, no doubt about that.
I actually think the fact that you are posting and engaged on the forum shows that you are actually keen to tackle this but you're still understandably - and perfectly normally - scared, resentful, frustrated and just trying to get your head around it. I know I was. Sadly I recall many new T1's who posted here once or twice with similar feelings and then just disappeared - so fair play for sticking at it.
It appears you're doing the fundamentals - testing, injecting and learning - but like most in the early T1 months you're struggling with the shock which is not unusual at all. You're doing absolutely fine 3 months in. If it was 3 years in then we have a problem!
And yes while it is permanent, it's definitely true that you get better at managing it, and like it or not memories of your old non-diabetic self fade (that you are currently benchmarking yourself against)... so it gets easier all round.
The options you listed are not quite right, it's more like:
1. don't be so careful - have a worse life now & have a worse life later - but make no compromises
2. be more careful - have a better life now & have a better life later - but accept compromises
(The reason on 1 that it is a worse life now is that even in the short term if you aren't being careful, if you're suffering persistent high and lows, you'll feel bad, nauseous, down... even putting aside the long terms implications of this approach)
The word compromise I used above (others might use 'adapt' or similar) is for me the key thing you need to comprehend.
While I can do pretty much everything I did before (ski, snowboard, sex, cycle tours of 1,000 miles in a week, climb 5,000 metre mountains, ride motorbikes, run marathons, eat, eat out, work) I have to compromise / adapt on all of them compared to my old non-diabetic self. Typically the compromise is in time, planning and less flexibility / spontaneity; not that you can't do things full stop.
Learning compromise is a very useful life and business skill though: this is perhaps the sole benefit of T1 I have found!
If I had to put a number on it, I would honestly say that I have 85% of the life I had before. Sometimes higher, other times lower. Some aspects of it I am still rubbish at (eg telling other people). I have a good HaBC1 of 38, but still have physical and emotional ups and downs.
My CGM helps massively, if you can possibly get one then do so.
I don't think anyone is really honestly saying it is great - though perhaps some people are closer to 100% (virtually no impact at all). Though for some who have posted saying it is ok/fine, do look at their previous postings and you will find that all has not always been well - especially in the early months of diagnosis - but they're now examples that things get better, a lot of that will be through time/learning improving things and also their mind strengthening as their pancreas weakened. As mentioned some other commentators you can discount and how they eg "I just got on with it" as they are talking about entirely different diagnosis, medication (none needed) and testing regimes (none needed) and prognosis.
I don't like it and certainly don't think it's great. I hate it. But in managing it I use that as a motivating factor: to me it is a competitor I want to beat. I beat it by keeping my bloods in range while still doing stuff (accepting there will be compromises). Nearly every day I win. Occasionally some days it will beat me. If you're struggling just try to win the next 5 hours. Then the next 5 and so on. Then introduce more variables (i.e. activities). So perhaps a competitive mindset of i'm going to beat it (rather than I have to accept it) might also work for you.
And remember in the first few months post diagnosis the long term target levels will take a while to become consistently achievable as you're coming from higher levels, and it is just generally always tricky as all the variables are constantly changing! So give yourself a bit more slack at first, you don't have to be perfect from today (you never will be). Patience is important.
It's hard. I'm sure like everyone you'll have used the words "it's too hard, i'm not doing it" and stormed off / given up at various points in life before: learning to ride a bike, a language, a new skill, etc. You've mastered other things before, you'll do the same here.
So while I don't think 100% (no impact) is possible, I'm far more incredulous about the 0% (my life is over) mindset. But fair enough if that is their experience.
All of the above is just in my experience.
You will define yours.
Finally, the two best bits of advice I ever had in life (and have helped cope with T1)!
- Time will heal the more painful moments
- Whether you think you can or you can't - you're almost certainly right
PS - I've decided in 2018 to be a little more open about diabetes rather than hide it away. Part of that is posting here. Another is telling people, as mentioned above I really don't like it. But I thought it'd be hypocritical if I went onto a forum to give out advice, if I wasn't prepared to follow advice that i've been given.
So tonight having a couple of drinks after work with an old colleague i've known for 20 years I decided to tell her as we were having a how's life panning out type chat. As the idea came into me head my anxiety leading up to actually saying it was extreme. But then I heard the words coming out of my mouth "can I tell you something"... now imagine a really bad Hugh Grant, bumbling umms and ahhs and silences... it literally took me about 3 or 4 minutes to get it out "i'm a type one diabetic". She looked at me as if I was a complete lunatic "is that it?! I thought you were going to say you had won the lottery!" She really couldn't of been cooler about it. Maybe i'm now at 86%!
