A bit of denial...

[kearagm]

Hi Everyone, I was diagnosed in the beginning of February this year when I was 18 (19 now), I was diagnosed in DKA which I’m sure all of you know is great. Anyways, everything was going really good for the first few months, I accepted it, and didn’t think too much about it. As I started to think more about it though I’m just really angry and definitely in denial about it. I just moved away from home for college and I haven’t been taking care of my diabetes very well. I hate what the insulin does it figure but I also hate how weak and tired I feel when I go on a no-insulin bender. I really just need someone to talk to and who shares my frustrations with diabetes. Thanks for listening.

 

[thomasrichmond_16]

I am 16 and just diagnosed 3 weeks ago and do feel as if I am already a bit angry about it

 

[DCUKMod]

Hi there @kearagm and @thomasrichmond_16 - welcome to the forum. Diagnosis with any condition, such as T1 must take a huge amount of getting your head around.

What you are feeling, although horribly unpleasant, is actually all very natural. Have a look a the attached article and have a look a the 5 stages of grief.

https://psychcentral.com/lib/the-5-stages-of-loss-and-grief/

That 5 stages cycle applies to almost any uninvited, less than pleasant change entering our lives.

There are lots of T1 on this site, and as you might hope, there are young people too. As the evening gets going, I'm sure more people will drop by to say hello.

Good luck with it all, and please do look after yourselves.

 

[NoKindOfSusie]

Possibly stretching the definition of young adult at 24, I'm not sure...

Anyway I don't think there's anything wrong with being sad about having a disease, it's not a nice thing to have happen and we wouldn't be normal if we never thought about it and felt "well this sucks." Because it does. That's just logic.

On the other hand you don't want to spend every waking minute thinking about it, which I admit I do given half a chance. Personally one of the main reasons I want to get back to working as much as I can is for the distraction, I have no idea if that is healthy but it reminds me of the line in a movie, "work hard, work will save you, work is the only thing that will see you through this" whether that's a job or studying or whatever. All the testing and injecting and calculating carbs is also a total distraction of course but if it is a matter of competitive distractions well... I will work a billion hours a week before I give diabetes one single second more than I have to.

I don't know if distracting yourself is a good idea or a bad temporary fix, but I do know that the longest periods I have spent not thinking about diabetes have been at work.

 

[fletchweb]

Hi Everyone, I was diagnosed in the beginning of February this year when I was 18 (19 now), I was diagnosed in DKA which I’m sure all of you know is great. Anyways, everything was going really good for the first few months, I accepted it, and didn’t think too much about it. As I started to think more about it though I’m just really angry and definitely in denial about it. I just moved away from home for college and I haven’t been taking care of my diabetes very well. I hate what the insulin does it figure but I also hate how weak and tired I feel when I go on a no-insulin bender. I really just need someone to talk to and who shares my frustrations with diabetes. Thanks for listening.

It's probably easier if you can't remember a time when you didn't have diabetes - I was in that boat so I had nothing to compare in regard to life without diabetes.

One piece of advice - guard your mental health against doctors. Based on my experience they will do everything to ensure you submit to a tight control regimen (even though they have no idea of what that is like) - They could potentially tell you - " if you don't follow tight control you will be plagued with terrible complications "- when I was in my early 20s I just got sick and tired of having neurotic episodes because of my doctors - so I decided not to see them anymore unless I needed a referral for a A1C or something. I needed to safe guard my mental health from a group of professionals who tend to focus on physical health. Looking back I'm glad I did this

My approach in University was to just enjoy life as much as I could - so my BGS were often not in the normal range - I had no diet, drank lots of alcohol a few other things along the way. I had a great University experience - I even graduated - met a mate and we then had a couple of kids.

So from someone who is 55 - been living with type 1 for 51 years - I would suggest you don't strive for perfection, don't let doctors bully you, try to enjoy your life without being plagued by medically imposed guilt. It worked for me and I seem to be better off than most of my non diabetic counterparts.

Be careful with the medical community - they mean well but ...

All the best!

 

[NoKindOfSusie]

if you don't followtight control you will be plagued with terrible complications

Errrr yup that's pretty much what they told me a month ago, and told me to be between 5 and 7 which as far as I can see is impossible.

This is basically equivalent to telling me "you will have horrible complications and there is nothing you can do about it."

These people are doctors and I am programmed to trust what they say. Lots of people say otherwise. Doctor Google is very frightening on the subject of complications and as a result of all this I literally wake up every morning, have ten seconds of enjoyable morning amnesia, and then remember I have this condition, and it is like being stabbed in the guts. I never really understood that as a way of explaining what a horrible shock feels like, but now I know, that is what it feels like.

I have no idea who to believe or what to think, what to be scared of and what to overlook, what numbers I should be at or whatever else is going on.

Do I have to choose between having a life now, and avoiding horrible disability later on? Is that seriously the choice? I am 24 years old, I can't make that kind of choice. Am I just **** at blood sugar control? Is everyone else hovering neatly at 6?

 

[Diakat]

No, we aren't all at 6 with slight detours to 5 or 7. Yes, this is sh*t, but - please @kearagm take your insulin.
Complications can happen, but no one is totally sure of all the risk factors, although yes high sugars don't help, but you can veer outside the lines and not immediately fall off the cliff.
No one is a perfect diabetic, just as no one is perfect. Hang on in there, give it time, it does get easier.

 

[NoKindOfSusie]

you can veer outside the lines and not immediately fall off the cliff

Then why don't they tell people that!

Sorry not your fault but jeez.

 

[Books1]

The medics say these things as they now seem to think that giving us worst case scenarios is the quickest way to get us to be perfect. They don't seem to realise that v few of us are perfect and therefore it's natural for us to assume that severe complications are the definite result.
I happen not to assume medics are the only experts as I have more knowledge than they do about ME and therefore use forums and official medical sources to educate myself.
I now have 2 conditions that could kill me but it doesn't stop me doing everything I want to do even if it does make life more complicated!

 

[Diakat]

Then why don't they tell people that!

Sorry not your fault but jeez.

How much time have you had to learn about this from non-medics? Try reading some of the chat from older members here, find out about the Novo Nordisk cycling team, but a copy of Think Like a Pancreas... then you'll understand that often it can get hard for all of us bit we also manage to live great lives and deal with diabetes and that medics don't do this all the time so can never understand.

 

[NoKindOfSusie]

I get what you're saying. The problem is that "I know myself better than the doctors" is something that is (also) said by completely crazy people who think they can cure cancer with herbal extracts so from my perspective it seems like I'm ignoring the advice of qualified professionals based on what some people on an internet forum told me. Which does seem a bit mad. I do not want to be sitting here in 20 years time with terrible problems thinking "if only I had done what I was told by the medics."

Obviously I'm playing devil's advocate here, or rather doctor's advocate, but you get the idea. For my entire life I have operated on the basis that doctor says do X, you do X, completely and fully and without hesitation. Right now I have medical people telling me to leap tall buildings in a single bound and I have you guys saying "eh it's fine" and it is very hard to figure out what level of deviation is OK and what will damage me.

I have suspected for a long time these are numbers for idiots who the doctors think won't take them seriously but right now I don't even have any parameters to work to. I don't know what I'm aiming for. It's impossible and it comes with horrible warnings about horrible things happening to me. I don't even know how to react to that. Medical people put people in this situation on purpose?

I do know that I am not living a great life at the moment.

 

[Diakat]

In the thread about What it is really like to be type 1, there is a great post by @Snapsy which talks about her anxiety as a young woman and about her struggles to keep in range.
@catapillar might also have some good advice.
@DaftThoughts is LADA but is pretty young and has dealt with mental health issues.
It does sound like you are very worried at the moment and hearing from others may help a little.

 

[catapillar]

No responsible and reasonable endocrinologist expects their type 1 patients to be 100% in target. If they do they are clinically insane and should be struck off.

No type 1 diabetic is 100% in target. No non diabetic is 100 within the 4-7 range. It simply doesn't work like that.

The target is just that, a target or an aim. No being in the target is fine. In fact, it's perfectly possible to maintain a hba1c that is within target and have up to 30% of your blood sugar readings over target.

I don't think doctor says X, you do X is a very healthy approach to managing a chronic condition. When you are a patient with a chronic condition you need to be the expert. As you are newly diagnosed you clearly don't have the expertise to understand the condition yet. I would highly recommend doing some sensible reading to get a better understand of how type 1 works how the targets work and what the complication risks are. Try the books think like a pancreas and sugar surfing (or have a look for Stephen pinders website on sugar surfing, he is a doctor who has type 1 and does a good job of explaining there's no need to panic when you go outside the lines).

 

[DaftThoughts]

I hate what the insulin does

If you don't mind sharing, what does insulin do that you hate?

I understand being angry and resentful at a chronic illness. I have several, and it makes you feel weak and stripped of your power - you didn't choose these things, they just happened, and there's often no real reason why other than you got dealt a bad card. Things like withholding insulin injections, frivolous spending of money, reckless activities and so forth can make you feel like you're in control again because 'you're living on your own terms'.

The issue with this is that you end up spiraling out of control with it. You stop being in charge at some point and it overtakes you, and then you'll be off even worse. And as you say, it just makes you feel poorly because your body is not meant to go without insulin, which makes it even harder to pick up the reigns and get back in the saddle.

Remember: the suggested range of 5-7 is a suggestion - strive for it because being at these levels makes you feel good, not because some dude in a white coat tells you to. You can even start higher for now. Just be anywhere between 5-10 for the time being until you've gotten more used to it. It helped me a lot to tackle this in steps. I started with trying to stay below 10, then as that was stable I moved on to trying to get it below 8. Now I set my goal between 5-7 and that's where I am most days.

There will be bad days, weeks, sometimes months - and that's perfectly okay. There's not a single human being on the planet whose vitals and bloodwork are perfect every second of their life. Right now I'm in an extreme period of stress and my values are going all over the place. That is not my fault though, this is because of stress. I do what I can. I recognize that I will have increased values until my source of stress is reduced or removed, and I am totally okay with it. I'm only human, I only have so many resources. Doing what I can is the most I can ask of myself.

@catapillar is absolutely right. Learn everything you can about diabetes, listen to your body, understand what's happening. Nothing has made me feel more in control over my illnesses than knowing as much as I can about it. I know more about myself than any doctor possibly can. If I hadn't known stress was such a big factor in my management, I would feel awful all the time for 'failing myself'. Now I understand I'm not. And that kind of power and control is better than any missed injection can provide.

Whenever I struggle, I remind myself of Captain Picard's words of wisdom:

Furthermore, don't be afraid to seek mental health counseling. Therapy can be a tremendous help by giving you tools to get your control back and to reconcile with your body and physical health. My only regret is that I was diagnosed pretty late at 25 years old, when I had been struggling since I was 15. Therapy is not shameful, or makes you weak - asking for help and working on yourself takes immense strength, strength which you've shown by reaching out to us. You can absolutely take your life back and be happy and healthy in doing so. I know where you're at right now, things feel horribly frustrating and useless, but I assure you that it's within your power to make positive changes.

 

[NoKindOfSusie]

Being at those levels doesn't make me feel good. Being between 5 and 6 makes me feel pretty rotten.

 

[Juicyj]

I remember within 6 months of being diagnosed that I was suffering badly with depression and anxiety, part of this was being set a completely unrealistic target by a nurse to stay between 5 and 7 mmol/l, something that I learned was completely unrealistic and this set into play my fear of complications, living with a condition 24 hours a day means you are the expert, you know what is possible and you also know that these spikes are mostly unavoidable, I agree 100% with @fletchweb dont let medical professionals rule your life, they only say this to scaremonger you into controlling your diabetes, however the flip side is that they don't live with it. I had background retinopathy about 2 years after diagnosis, I was scared if this progressed it could lead me to losing my sight, so I started to stabilise my Bg levels, a year later my sight test came back as normal, I was still having spikes but had manged to tighten my control, since then I worry far less about complications.

Read 'think like a pancreas' increase your knowledge and with that you can improve your anxiety and confidence, remember this is a marathon not a sprint.

 

[Scott-C]

I was diagnosed at 21 and certainly remember the anger/despair in the first few months. I'd been very active pre-dx, cycling, ski-ing, sailing, but the DKA had knocked the stuffing out of me so much I thought well that's that.

But, guess what, although it might not seem it at the moment to recently dx'd, you figure out how the rules of the game work and you get back on the bike.

I've been away backpacking for months on end, two week long cycle tours, go to the pub, eat high carb pierogi when I'm on holiday in Krakow, been to a nightclub in Tallinn till 4am where there was a poster at the front door telling people to check in their hand-guns ... and people were! You can still live it up as a young T1 but, sure, there's a few other things you need to keep in the back of your mind.

Your dx doesn't end your life. You can carry on fairly normally, but, sure, you do need to think ahead a bit more when it comes to food.

Re complications, just after dx I read an article by a woman who was running the risk of going blind a few years after dx. I remember saying to myself that's not going to happen to me. Almost 30 years down the line, it hasn't. Nowhere near it.

You owe it to yourself to try to stay in range as much as possible. There's no guarantees about complications but all the evidence suggests you improve your chances by doing so.

Doesn't mean you have to live like a monk. I go to the pub each weekend.

I've been in the game long enough, and also cheat a bit by using cgm, to be able to stay round about 4 to 7 for extended periods without thinking about it too much because I just kinda know how much is needed for each meal, but at the same time, I know that if I get it wrong and end up at 9 to 10, or, aargh! above 10, I'm not going to worry about it too much because it's a long game. The problems only really start if you get to the stage where you're floating around 10 to 15 for days on end and not bothering about it. The occasional visit to above 10 because you've made a miscalc on that pizza after a night on the town which is corrected quickly is no big deal in the long run.

This might sound a bit new age hippy, but after the anger runs its course, I prefer to think of it not as an enemy but as a bit of my body had gone wrong, so I need to help it, me, out. That way it just seems more like co-operation than a fight.

Sure, be angry at the moment, it's good to let that run its course, but you can't stay angry forever. With me, it reached a stage where I just took a deep breath, thought, ok, this has happened, I'm T1, deal with it, learned what I needed to know, and got back on the bike/skis/boat.

 

[kearagm]

I’m not too sure what you mean by stating between 5-7? But what I hate is that before I was diagnosed I weighted 110 lbs and after going on insulin I’ve gained 15 lbs and I’ve tried everything to lose the extra weight but nothing has worked. I haven’t gained any more weight since but still I’m not used to weighing this much, I don’t like weighing this much and I can’t do anything about it while on insulin

 

[Diakat]

@kearagm are you in the US? Is that why 5-7 means nothing? We use different units in the UK - multiply by 18 for US figs.

I know weight is a difficult subject, but when you say 110 lb, was that right before diagnosis? And had you list weight at that point? The weight gain you are experiencing is most likely just you getting back to a healthy weight and will level off. How tall are you? 125 lb is still a pretty low weight.

 

[kearagm]

Yes I’m in the US so we measure with mg. Right before my diagnosis I dropped to around 95 pounds. My normal weight, what I weighed for years before my diagnosis was 110. I’m only 5’1” so going from 110 as my normal weight to 125 is a big difference for me