Just passed 15yrs diagnosed, still in Denial

[Tickley93]

Hey,

So i really don't look after myself, like at all.
Diagnosed when i was 7.
As soon as i was old enough to manipulate my levels to gain access to sweet foods its all i did.
Used to over compensate for breakfast so that i would have a hypo during second class, this would allow me to take a friend with me to the medical room in school and have a dextrose tablet and chill out (skipping class) did this daily...
When i was in my teens (23 now) and was on injections, i used to make up my levels in the little booklets so my doctor would think better of me. HbA1c was at 14.0+ for a good couple years...

Had a pump for 5yrs now,
HbA1c over that time went from 14.0+ down to 8.9 last time i went. (fluctuated a lot between those numbers over the years)
I probably see the nurse or doctor once a year, sometimes longer.. (kept my doctors at home, went to uni, cant make the set appointments + sometimes i used to just not go, if i'm honest)
When i did go in i would 'forget' my blood meter, so they couldn't look at my real levels, then i could just blag it..
Have a friend who works in pharmaceuticals, he dragged me down the hospital aisles of diabetes related amputations and blindness etc. patients.. I appreciate that i'm walking down the same road, but on the day-to-day basis, i don't seem to care.

Now to the present day.
I know i'm a complete idiot, and its a miracle i'm not already looking at complications due to my poor control, but i still dont seem to care. The last time i checked my checked my levels was 2 weeks ago (which is f*cking ridiculous) and i only bolus if i start to feel weird.. (slight cramping around my lower stomach, headaches, feeling sick etc..) I eat whatever i want, whenever i want it..

My body seems to have adapted to survive on the base basel rate of 35mmol of novorapid throughout the day, and just 'cope' with the food i'm eating, with zero knowledge of what my blood levels are.

Every single time i neglect my Diabetes, it pings in the back of my brain, but a cocktail of laziness, denial and straight refusal to put in the extra work stops me from doing anything about it.. My glucose meter is in my bag, with me, but i wont use it.. Madness...

I read through the forum and see people panicking over slight changes in their levels or food intake, and i wonder if i'm seriously wrong in the head, but i cant seem to find the motivation to do anything about it, i don't listen to anyone, i just 'nod and agree' to all nurses and doctors.. I lie to my parents about how im doing to keep them from asking...


What can i do? (Sorry that was a lot longer than expected)

 

[Juicyj]

Hey Tickley, good to read your post, it's there for a reason, that nagging voice at the back of your head shouting help before it's too late, that's your voice of reason, it's never too late or too soon even to start taking control.

It's seems like your 've been playing every game going to just get by and not do anything about it, question is why ? Are you just trying to pretend it's not happening ? Or is there another reason ?

What support do you need ? Shout, your amongst friends here, if we can support you we will

 

[azure]

Hi @Tickley93

No, I most definitely don't think you're wrong in the head! Diabetes is a real pain and its wearing day after day. But for me, not having my blood sugar controlled is letting diabetes win, and I don't want to do that. I hate having diabetes and if I can get one over on it by getting good blood sugar results, then that makes me happy.

So I test and carb count and every time I get a good result, I mentally make a rude comment to my diabetes. Thats how I deal with it and deal with the hard work needed to keep it in its place.

 

[himtoo]

hey @Tickley93
welcome to the forum
in my opinion the very fact that you have posted and are asking acknowledges you know the true answer in your heart.

you don't have to do f*ck all to satisfy me - - i have lived with this **** condition most of my life and I could cry my eyes out for you and you losing your potential - i hope you can stick with us here and we will do our best to help -- but you have to want to - and nobody else can make you

keep posting
paul ( himtoo )


edit -- tagging my bestest mate @MH2010 ( she's been where you are ! )

 

[Tickley93]

Hi Guys,

I would be inclined to agree that I'm pretending i don't have anything wrong with me.
On the rare occasion that i do test my levels regularly and eat well and bolus properly (say for like a few days whilst i'm at my parents and its harder to cover up) i'll find that i have so much more energy, I rise earlier, i'm not tired all day, i'm more pleasant to be around etc.. But i'll still fall back into 'the pit' a couple days later.
My last relationship helped somewhat, because she was quite pushy with me regarding my health, but soon i was lying about my health to her, to keep her from asking too..
I need to find the motivation for myself, but i'm just not sure where it is..
Poor control makes me tired all the time and incredibly lazy.. I know because i give up on things so quickly now, i procrastinate with a passion... I quit the gym because it was 'too much effort' to go..

I used to be a contemporary ballet dancer for the london ballet school, and a trained gymnast.. I used to do track for my home county, and studied Karate religiously.. All dropped because of my lack of control and the grip it has on my motivation to try/do anything... This is so **** to write about, but it feels good to get it all out.. Is that good?

 

[himtoo]

its brilliant mate -- because you can see the harm you are doing to yourself -- it sounds as though you have so much potential but have given up on yourself.
virtual hug on the way -- [[[hug]]]

ask yourself if you want to be the 47 year old on the hospital ward having a leg off - or if you want to become a ballet instructor still doing the moves and inspiring youngsters at 54 -- only you can answer

 

[Juicyj]

It's definitely good to get it out of your system if you use it for your good. You need to find the drive and determination to take control, we can all preach about the consequences but we can't tell you what to do, you know deep down the answers. Some find it when they get a stark wake up call, but sadly a lot of damage has already been done at this point, maybe start with why you want to feel better and the positives and see if this gives you the motivation to make some changes. Maybe a call tomorrow to your team and tell them exactly what's been going on ? They cannot judge you or tell you off, but should give you support to keep on the right path. This forum has posts from all walks of life, maybe you can find some buddies here who will help you

 

[MH2010]

It is brilliant that you joined the forum and are expressing how you feel as I'm guessing you wouldnt have joined if you didnt want some sort of help.

I have been type 1 for 25yrs and have been EXACTLY where you are now.

I only started to properly accept things were wrong when I gigured, f*ck, I'm almost 30 & have let this **** be in control of me my whole life.

With the help of the people on this forum, I have managed to get my HbA1C down from 120 to 40 (fair enough it is ay 48 now but who really cares??)

You need to sit down and figure all the things that could/will happen in your future, how the 'bad diabetic'**** will stop the good things from happening and makie the bad things feel worse.

Jesus, I am being logical!! Sorry, been doing this logical thinking a lot lately lol.

Keep posting your thoughts and feelings and believe me,you will see that taking control will be the best thing you can do. X

 

[Tickley93]

Thank you, love the optimism.

I'll give them a call tomorrow, lets see how they take it.

 

[tim2000s]

Well, done, you've made that all important first step by jumping into social media and opening up. Many of us can sympathise with where you are and where you've been. Filling in diaries with made up numbers is something that I think just about every T1 has done at some point in their life, as well as accidentally forgetting your meter... I've certainly been there.

I'm guessing that the little voice is being quite loud at the moment because something has happened and it has scared you a little. If you don't want to talk about it in public that's okay too, but that's what happened to me to make me get back on track properly.

Feel free to take as long as you like to let it out on here. We've all plenty of experience of the ups and downs that accompany T1.

 

[azure]

I think if you can identify exactly what drives you to behave in this way, then that will be a big first step in overcoming it.

You know you can do it because you say you test and bolus at your parents.

Diabetes is a nasty, sly beast and it can do damage quietly and invisibly. In a way that makes it worse because someone can feel ok but have damage being done to their body. If bad control had immediate results, then I think people's reactions would be different maybe.

 

[himtoo]

you must not see how "they " take it -- take charge and admit your failings and DEMAND ( in a polite way ) that you need help
they get paid to help look after you

and come back here for support too

 

[Tickley93]

@tim2000s hadn't put the two together, but you're probably right with that 'something happened' comment..

About a month ago my cannula fell out whilst clubbing (dancing + sweat + was the 4th day it was in) and i didnt notice.. I went completely insulin-less for a significant amount of time, until i passed out in the venue. Luckily my housemate knows my situation and carried me to a cab and got quite loud and factual until he agreed to take us home.. I was drifting in and out of 'sleep' but with his help i got a new cannula in and checked my levels.. 'HI' on the machine.. did a bolus and waited.. turned out during the panic my housemate had ordered an ambulance to the house, they sat with me and kept an eye till my levels returned and then i filled out a refusal of service form so they could leave me at home.

Its been in the back of my mind ever since.. Although not directly linked to my own failings, it has brought a wider range of feelings regarding my control, to the surface..

 

[Mrsass]

Thank you, love the optimism.

I'll give them a call tomorrow, lets see how they take it.

I think you will be surprised how much they are NOT shocked, none of us are perfect, we all have struggles with diabetes at one time or another, in my teenage years I was just like you, not a clue how long I went for never testing my bg and making up pretend readings at clinic appointments, I think I got my act together around 5 years ago, I don't know what exactly made me do it but I remember thinking why am I not looking after myself!? I think when you can't see the damage you are doing ignorance is bliss,

I'm glad you posted, as others have said you must want some help otherwise you wouldn't have bothered, do phone your team tomorrow and remember there is lots of people here to support you too

Abbie

 

[rachel162]

Hey @Tickley93,

I'm sorry to hear things are so difficult!

I definitely see where you're coming from; not too long ago I was made aware (by a fellow T1) of how poor my control had actually become after collapsing at work without even having my testing kit or any hypo treatment on me. I then flitted through periods of intense control and periods of ignoring my body completely; gaining control just seemed like too much of a mammoth task!

I think gradual changes are what's helped me the most in terms of limiting my hypos and bringing my HBA1C up. Trying to go from not even carrying my testing kit to multiple tests, basal checks, better food etc all at once just caused me to burn out completely, but small commitments like testing at least once a day, making sure I got at least one proper meal at work rather than quick sugar fixes etc had a massive impact. Seeing improvements straight away without it having to take over my life just motivated me to continue! My control is still far from perfect but it's improving, and for me that's what counts.

Your HBA1C has clearly come down a lot from your teenage years, so congrats on that! Just keep it going, take things slowly, and as I think everyone else has mentioned, we're all here for support

Best of luck x

 

[mentat]

My advice is simple: make it a habit.

Don't think about it, just do it. Anything that requires thinking or agonising ("what dose should I take?") should be eliminated and replaced with an automatic behaviour.

You can do thinking and reviewing at a specific time, maybe once a week, but the rest of the time needs to be as automatic as possible. That way worry, emotions, and laziness don't get a chance to take hold.

Hope this helps.

 

[fern000]

it's great that you are thinking of making a change! Take things slow and steady and always remember to push on whenever you feel like giving up or when things get tough. You can let your friends and family know about your decision to change your habits and have them help you stay on track, such as reminding you to take your BG tests. I'm sure they will be really happy to help.

Hey,

So i really don't look after myself, like at all.
Diagnosed when i was 7.
As soon as i was old enough to manipulate my levels to gain access to sweet foods its all i did.
Used to over compensate for breakfast so that i would have a hypo during second class, this would allow me to take a friend with me to the medical room in school and have a dextrose tablet and chill out (skipping class) did this daily...
When i was in my teens (23 now) and was on injections, i used to make up my levels in the little booklets so my doctor would think better of me. HbA1c was at 14.0+ for a good couple years...

Had a pump for 5yrs now,
HbA1c over that time went from 14.0+ down to 8.9 last time i went. (fluctuated a lot between those numbers over the years)
I probably see the nurse or doctor once a year, sometimes longer.. (kept my doctors at home, went to uni, cant make the set appointments + sometimes i used to just not go, if i'm honest)
When i did go in i would 'forget' my blood meter, so they couldn't look at my real levels, then i could just blag it..
Have a friend who works in pharmaceuticals, he dragged me down the hospital aisles of diabetes related amputations and blindness etc. patients.. I appreciate that i'm walking down the same road, but on the day-to-day basis, i don't seem to care.

Now to the present day.
I know i'm a complete idiot, and its a miracle i'm not already looking at complications due to my poor control, but i still dont seem to care. The last time i checked my checked my levels was 2 weeks ago (which is f*cking ridiculous) and i only bolus if i start to feel weird.. (slight cramping around my lower stomach, headaches, feeling sick etc..) I eat whatever i want, whenever i want it..

My body seems to have adapted to survive on the base basel rate of 35mmol of novorapid throughout the day, and just 'cope' with the food i'm eating, with zero knowledge of what my blood levels are.

Every single time i neglect my Diabetes, it pings in the back of my brain, but a cocktail of laziness, denial and straight refusal to put in the extra work stops me from doing anything about it.. My glucose meter is in my bag, with me, but i wont use it.. Madness...

I read through the forum and see people panicking over slight changes in their levels or food intake, and i wonder if i'm seriously wrong in the head, but i cant seem to find the motivation to do anything about it, i don't listen to anyone, i just 'nod and agree' to all nurses and doctors.. I lie to my parents about how im doing to keep them from asking...


What can i do? (Sorry that was a lot longer than expected)

 

[Robinredbreast]

Hi and welcome @Tickley93 , so sorry to read of your problems and worries, I hope you will find good motivation and well being, which will help to make your future a brighter, happier one when coping with life and diabetes.

Take care RRB

 

[Mike d]

This is so **** to write about, but it feels good to get it all out.. Is that good?

You bet it is ..... I admire you a lot for that and I don't do handouts to anybody purely for the sake of it.

Please take control of your future as you obviously have a lot of talent so direct your attention to those pursuits and (for your sake and those that do care about you) keep at it. Do well, keep well, and above all, stay well.

Mike

 

[pumper1969]

Hi tickley93, glad you are getting some of this off your chest. I am now 46 and have had type 1 since I was 5 and I have to say I was fairly similar to you in my attitude to it, EXCEPT when I was in my teens and twenties there WAS no pump option.....so no matter what I did I felt I had no control and it was all over the place.

The wake up call for me (and my doctors) was that at age 30 after 25 years of poor control, I developed retinopathy in both eyes and needed 2 x 3 lots of laser and was told I'd lose my driving licence within 12m. My specialist then put me on a pump as an experiment and imported one from the states - trust me, having had zero control and being told my sight was going, going to a pump was unbelievable and gave me my life back.

Even if I had had a pump, it may have taken the wake up call of the laser to make me take it seriously, as only then do you start thinking about real consequences, like having kids, not being able to drive, etc etc.............but the pump changed my life. It obviously comes at a cost as you know that you CAN control it if you test and bolus etc, but it's only as good as the effort you put in....

I hope you take the help that's out there from doctors and this group as we all appreciate it's a big pain, and I hope you find a way to make it a habit before it catches up with you. Since going on the pump, my retinopathy has stopped entirely and I've needed no more laser in 12 years, and my control is back in my hands. Don't get me wrong, my control goes wrong at some point most days and needs tweaking (!), but if I do my best it maybe takes me 5 minutes max a day to test/monitor it, and my specialist says I now have no reason to expect any complications.