17 years a type 1 diabetic

[Emilybriggs.94]

Hi everyone, just wondering if anyone else has the same issues as me as I'm feeling quite isolated with my diabetes. I try and controll my diabetes as much as possible but from time to time I get extremely frustrated when my sugars run abit high and feel like no one around me quite understands the emotinal upset it causes, I've had comments such as "your a dead woman walking" and been told I need to eat more as I'm quite slim all these little things that get said thay aren't ment in a malicious way but still hurt, people tend to say "it could be worse" and "well see your nurse then"to be honest I feel totally fed up with being type 1 diabetic and at times in the past years it has made me feel suicidal, I pick myself up again but I'm at a point now where I'm so selfconciousus about my weight that I am avoiding going out to social events bevause I dread someone commenting on My weight I feel like it is aging me and I HATE being hypo the feeling is horrendous and I feel like my brain is going to shut down when it happens I joined this group because I dont know anyone else who is type 1 apart from my mother who is now disabled. Sadly she doesn't have the capacity to understand how I feel about it all. I'm sick of the feeling sick when I've eaten (I'm told that is it the nerve ending in my stomach) has anyone else who had had diabetes for 17 years or more felt this way? Feeling depressed and tired all the time.

 

[Guzzler]

Hello and welcome. I'm so sorry I don't have any advice as I am T2 but hang on for a while the people with T1 will come in and offer up advice and support (they're very good at it). Have a wander about the T1 section and the rest of the forum while you're here.

 

[Emilybriggs.94]

Hello and welcome. I'm so sorry I don't have any advice as I am T2 but hang on for a while the people with T1 will come in and offer up advice and support (they're very good at it). Have a wander about the T1 section and the rest of the forum while you're here.

Thanku x

 

[EllieM]

I HATE being hypo the feeling is horrendous and I feel like my brain is going to shut down when it happens

I agree, I honestly find hypos the worse part of being T1 (but I am very lucky in that I've had 48 years of it with no significant complications.) I've been T1 since I was 8 and probably had quite high blood sugars in childhood since I had very few hypos then and there were no glucometers available to test blood sugars till I was in my twenties.

I lose hypo awareness once my hba1c goes below about 7 (52 ish) so I've recently been running a little higher (54 hba1c) and got my hypo awareness back (a big relief as regards night time hypos and knowing that I'll wake for them.) I'm considering getting a dexcom so that I can go a little lower and have automated hypo warnings. If the freestyle libre worked for me (it doesn't) then I would try to get that prescribed (or self funded) and attach alarms so that I got warnings before I went hypo.

As regards your other symptoms are you avoiding injections of insulin because you're afraid of hypos? If you're underweight because you're not injecting enough then I would suggest that you see your DN urgently and try to get help. There's a special section on the T1 boards for people with eating disorders,(though I'm not sure whether this is your situation), which are unfortunately extremely common for T1s. (People tend to assume that eating disorders occur when people want to lose weight but they can be caused by all sorts of other things eg elimination diets and once your weight goes below a critical threshold it can be very difficult to think/act rationally about food, let alone adding insulin and diabetes and hypos into the mix.)

https://www.diabetes.co.uk/forum/category/eating-disorders-and-diabetes.77/

Hopefully you haven't got an eating disorder (you've got enough to worry about with the diabetes) but I thought I'd mention it just in case, and because it is treatable if you get help.

Anyway, I can guarantee that there are many many T1s on these boards who will understand your hatred of hypos. I wish they'd make all medical professionals who deal with insulin dependent diabetics experience one just so they know how it feels.

Lots of virtual hugs. You are not alone.

 

[kitedoc]

Hi @Emilybriggs.94, From my experience of diabetes but not as professional advice or opinion: First of all, it is great that you have joined this site.
If you are like most of us T1Ds (Type 1 Diabetics) we try to be as independent as possible, pulling oneself up by one's own shoelaces. To seek help, to admit that we cannot always cope, can be interpreted by us as a strike against your self-esteem. But as they say: Discretion is better than valour.
But please know that there are a number of us who have survived and thrived and are now in our 30th, 40th, 50th or 60th decade of being on insulin. I am not saying it is easy, but that it is possible.
Yes, I certainly have been through the doldrums of depression, self-doubt, feeling different from everyone else, is-life-worth-living?, and the frustration and anger of it all. What helped to get past this and survive? Please read this and re-read, think about and come back to whatever helps or interests you. Please keep posting +++++++ with questions, queries, what local knowledge is there etc
1) seeking help and support - this site, ? a peer support group, close friends and family (not the 'well-meaning' ones who comment on one's weight etc), and fostering good relationships with healthcare professionals such as your DSN and doctor. Sometimes I found that the relationships with professionals are not good and I needed to find ones that suited me better).
2) lifelines - people or organisations I could contact if I was feeling really down, a health professional or NHS crisis line, a good friend who really listens and I certainly have seen counsellors in the past who have really helped me.
3) the bright side rather than the dark side: feeling negative makes it more difficult to accept the positives in life: my specialist says he welcomes all new T1Ds and his first question is: do they have or plan to have a good normal-age retirement plan? The outcome these days for T1D is that good. Muggins here, retired in 2014 at the 48 years on insulin mark and that journey started before fancy insulins, glucose meters, insulin pumps and all that malarky!! The 'good, old days' are not as good as today!!
4) humour and self-humour: I am now on an insulin pump, best decision I have ever made, (but 10 to 20 years earlier would have been nice), but my eye specialist does not have glasses for hindsight Doing injections was 'javelin practice" done to the humming of an old, old pop tune "Needles and Pins", going to a restaurant became like the Forrest Gumpism: "life is a box of chocolates, depends on what you get" and menus are like that sometimes!, hypos - those embarrassing, beastly disasters - I took ages to overcome the ignominy of them - like the time I, an Aussie male, was hypo and was trying to put an imaginary token in the turnstile slot device which led to the women's change room at the local swimming pool. You can either laugh or cry! (And I was hypo - honest)!!!
A father and son make a bet on what BSL Mum, the diabetic, will have before dinner. The loser does the washing up.
A friend of mine gave me a 5 kg jar of Nutella for a birthday - I gave him a 50 g one in return and asked for a swop!!
Self humour is a shield to help shirk off the slings and arrows of outrageous fortune and help us overcome your own sensitivities to things like weight, appearance etc. A slim past colleague of mine used to say: "We cannot all look like Twiggy but I just tell them that I am Twiggy with bones of steel and the brain of a blue whale.
5) extend or develop an interest or three: healthy people tend to have hobbies/interests etc. such things may develop from study or work interest or from a desire to meet others with a particular interest: examples are gardening, sports of various sorts, photography, craft making, um.. film conventions, cosplay, drama, dancing, indoor soccer etc. Things that give you a sense of purpose and achievement; that ideally involve some exercise and socialising; that get one up and about, not sitting down all day with a computer screen and physically-absent acquaintances (not the times spent on this site however just not 24/7!!); that can evolve as you become more interested; that are affordable and not overly risky (sky diving anyone?); that do not detract from other priorities like diet ( cake and sweets- making?), relationships (hypothetically I have yet to find others who would voluntarily join me to indulge in painting garden gnomes as a hobby, but maybe I am just not 'with it' enough). Something that adds meaning or involves taking opportunity e.g. walk to the shops, take pictures along the way, shop, have coffee with friends, home with the shopping and some pictures to edit) (My avatar hints at my hobby and the kite is the colours of a frog) and provide a measure of achievement, (see how much less petrol you have used and how many more cobwebs have formed on the motor car)
6) We all make mistakes: A comic scene I am fond of quoting shows a man being interviewed for the job of Chief Manager at a training agency:
Interviewer: "Mr Jones, what makes you think you are the best candidate for this position"?
Mr Jones: " Well , I believe you learn from your own mistakes. And I make enough to train everybody here!"
So, on this site collectively we make made just about every mistake with our diabetes that is possible. If we learn from a mistake then we are wiser (and even moreso when we work out how to stop making the same mistake again)! Self humour helps to take the sting of embarrassment out - and all of us have times when we do all the right things and obtain a great result and other times when the exact same right things lead to a less good result. Frustration only raises the BSL. I blame the weather, the season, and others the 'good' or 'not so good' diabetes gremlins. They generally do not answer back!!
I leave the more intricate matters about diabetes to all those ladies on site who have the clearmindedness, experience and wisdom to know about how to manage diabetes as the better half of humankind. (yes I am perhaps sucking up but I do not wish to be on their wrong side). Best Wishes, fellow warrior!!!

 

[Alison54321]

I've had diabetes for 42 years, and am still surviving. I was in my late teens when I got it, not a child. I think the age at which we get diabetes can have an impact. For me I was left to go to university, and pretending to be an adult, with very little support, and not much idea how to manage it, but that meant being diabetic was never the biggest problem I had, so it was more a nuisance, than a life defining problem.

But I think maybe @kitedoc is right, that it would be worth exploring who you wan to be, beyond diabetes, find things to do that interest you, whether gnome painting, or something else, then build your identity outside of having type 1 diabetes, so it doesn't define you, and take over your life. You are a person who has diabetes, not a diabetic, sort of thing.

Obviously good control matters, but a diet rich in antioxidants will protect your cells from damage caused by high blood sugars, so eating lots of anti oxidant rich food, like fruit and veg, is good. My diabetes has made me very interested in nutrition. After all, we are like people without diabetes, they may have perfect blood sugar all their lives, but if they haven't exercised, and followed a good diet, they will be ill too. So you might end up healthier than some of those who are making critical comments now!

Remember that we need the same things as other people, yes good control matters, but we also need the same things as other people to stay healthy, good relationships, hobbies, a job we enjoy, healthy diet, exercise. So don't allow other people's comments to upset you, work towards who you want to be, as a person, regardless of whether you have diabetes.

 

[WhatTheFork]

Hi Emily, I just want to say I admire your wisdom to seek out help for this very challenging situation. I wish I had that wisdom to do this when I was your age. I have had diabetes since I was a toddler. I remember them stabbing tiny 3 years old me with those massive needles, but still, teenagehood was a lot harder. In fact I think it was the toughest time of my life. Being a teenager is hard enough, feeling alone and lost while also feeling pressured to take up so much responsibility for a condition that will impact you your whole life just multiples it all X100. Depression is already such a serious problem for teens, but in this situation, when there appears to be no end in sight, it is absolutely normal to have this reaction.

People will offer unsolicited advice for the rest of your life. "this one cool tip that will cure you of your diabetes!!%2", insinuating you are not doing the right thing to rid you of this illness as if you choose this! Nevermind these people, they like to hear themselves talk, not noticing they are spewing **** all over everyone.

Unfortunately, people commenting on your appearance isn't another trophy of being a diabetic, but rather being a woman in this world. But that is no reason to call out said person if they are being rude.

And whoever said "you're a dead woman walking" is just a trash person. This person is obviously far sicker than any of us here.

I take a different philosophy; my diabetes is a Canary in the goldmine so to speak. Meaning the recommended lifestyle that applies to everyone, applies to me tenfold. Funny thing is though, most people (including your sick in the head friend probably) do not. Given the serious health problems that our society face in terms of diet, this is a gift. (It is okay if you don't see it that way, this is probably my personal coping strategy I have come to after struggling for so long).

I didn't sort myself out until I was way out of my teen years. But I hope my experience can prevent someone else from having to go through all those pains. These are the things that helped me:

1. Therapy. Understanding this situation is unfair and I have a right to be as mad as I **** please about it BUT it's my life and I only get one, so I can spend it in pain or I can stab myself 10 times a day and strive for contentment. Also, you are so worthy of a healthy life and happiness, no broken organ can stop you!! I could not have dug myself out of that dark hole if I hadn't dealt with my internal turmoil first.
2. Experiment. foods can be your best friend or worst enemy, research and closely monitor how it affects your blood sugars and establish a list of safe foods for yourself. Low carb has a lot going for it
3. Routine. I eat the same thing for lunch and breakfast everyday. It may be boring, but I know exactly what I am going to do that day. I started small (same thing for breakfast on work days) so again that is where experimentation comes into play again. Every diabetic is different, but I find lentils keep my number steady without insulin and exercise.
4. Exercise: This has just made my life better all around. You are at a great age to establish some good habits, so take advantage of it. Also, it is known to help depression

I hope you feel better soon. You deserve fufilling and rich life defined the way you choose and it absolutely possible!

 

[Munkaroo]

Hi everyone, just wondering if anyone else has the same issues as me as I'm feeling quite isolated with my diabetes. I try and controll my diabetes as much as possible but from time to time I get extremely frustrated when my sugars run abit high and feel like no one around me quite understands the emotinal upset it causes, I've had comments such as "your a dead woman walking" and been told I need to eat more as I'm quite slim all these little things that get said thay aren't ment in a malicious way but still hurt, people tend to say "it could be worse" and "well see your nurse then"to be honest I feel totally fed up with being type 1 diabetic and at times in the past years it has made me feel suicidal, I pick myself up again but I'm at a point now where I'm so selfconciousus about my weight that I am avoiding going out to social events bevause I dread someone commenting on My weight I feel like it is aging me and I HATE being hypo the feeling is horrendous and I feel like my brain is going to shut down when it happens I joined this group because I dont know anyone else who is type 1 apart from my mother who is now disabled. Sadly she doesn't have the capacity to understand how I feel about it all. I'm sick of the feeling sick when I've eaten (I'm told that is it the nerve ending in my stomach) has anyone else who had had diabetes for 17 years or more felt this way? Feeling depressed and tired all the time.

Yes,my name is Tina.I’ve had it almost 30 years in 1/19.Lately I’ve been gaining wait wanting to lose it. I’m always tired and love to sleep atleast 8hours daily.If I don’t get hours of sleep my blood sugar gets high.I don’t get SSI but I’m in the process of trying to receive it.I’ve waited next month 20 months for an answer.Do you get SSI?Also,I’m diagnosed with anxiety and bipolar.

 

[type1gabs]

Hi everyone, just wondering if anyone else has the same issues as me as I'm feeling quite isolated with my diabetes. I try and controll my diabetes as much as possible but from time to time I get extremely frustrated when my sugars run abit high and feel like no one around me quite understands the emotinal upset it causes, I've had comments such as "your a dead woman walking" and been told I need to eat more as I'm quite slim all these little things that get said thay aren't ment in a malicious way but still hurt, people tend to say "it could be worse" and "well see your nurse then"to be honest I feel totally fed up with being type 1 diabetic and at times in the past years it has made me feel suicidal, I pick myself up again but I'm at a point now where I'm so selfconciousus about my weight that I am avoiding going out to social events bevause I dread someone commenting on My weight I feel like it is aging me and I HATE being hypo the feeling is horrendous and I feel like my brain is going to shut down when it happens I joined this group because I dont know anyone else who is type 1 apart from my mother who is now disabled. Sadly she doesn't have the capacity to understand how I feel about it all. I'm sick of the feeling sick when I've eaten (I'm told that is it the nerve ending in my stomach) has anyone else who had had diabetes for 17 years or more felt this way? Feeling depressed and tired all the time.

Hi Emily

First things first, youve made such a big step i2b admitting you are depressed and are reaching out . Secondly i can completely relate, i am 25 and had T1 diabetes since i was 1, when i went to university i sufferred from diabulemia put on antidepressants .. but now getting control of my diabetes and help in march 2018 my hba1c that was 118 is now 60 i also ran the great north run this year ( half marathon in newcastle). So if i can change my life round you can too!

I understand you can feel lost and 'whats the point' when you try your hardest to get it ubder control but it doesnt want to play ball. From my personal experience, i had to really hit the bottom of depression to really make me realise that i want to be healthy for my kids in the future, i want to grow old with my partner, i want my parents to see my grandkids... and wuite bluntly if you keep going the way you are, complications will hit you ( you probably already know this). But if like me i just was in denial and just thought 'im young it wont happen to me'

What really helped is if you just say to a close one, whether family or your partner if you have one, i need help and im struggling. Theyd hate to know you feel so alone with it and want to support you l. I first told my mum, and she broke down in tears. We then booked in to see one of the diabetic nurses (i find they have more empathy than the doctors at first) . We saw the most lovely man who just listened, respected the fact i openly came in and asked for support, in which i was booked in to see the dieticans and consultant on 3month regular basis. The dieticans fron what you were saying the relationship you have with food, would be the most benefical to you after 24 years she told me things i had no clue about, like having fats with carbs slows down glucose release even if really low gi, and other tips and tricks. They alao gave me their mobile number so if i was having a horrible day where nothing was going to plan, i could call them and theyd advise.

Like you i was very bad tempered, sleeping all the time, no energy to do anything and just not a nice person to be around when my sugars were.constantly high. Its only til now that my sugars are better controled that i can see how much happier i am, better relationships i have with everyone and how i am really living lofe to the full. If you ever have a bad day and want to talk to someone you can message me i also dont know anyone else diabetic so sometimes i feel people will never understand how im feeling and feel isolated with it... but we are here

Good luck! Xxx

 

[kitedoc]

Hi @Emilybriggs.94, How have your last 2 weeks been like ?

 

[Emilybriggs.94]

Hi @Emilybriggs.94, How have your last 2 weeks been like ?

Hi! Thank you for asking it's much appreciated I have been ok in general my diabetes management has been under control (not perfect but hey ho). How are you? Are you type 1 aswell?

 

[kitedoc]

Hi @Emilybriggs.94, Yep, on insulin for 52 years here in Australia. And on an insulin pump for 7 years.
One of the two best things I did!
Going onto a low carb diet is the best thing, though , 6 + weeks ago. BSLs even better. Not saying it is for everyone.
But reading: "Dr Bernstein's Diabetes Solution" book or e-book was an eye-opener. Read it and see what you think!!
Best Wishes
..inspiration............Those finger pricks......Cool it, ............Even when things....We all make some....Always
...................................and injections...........stress less.........look challenging !....mistakes, and learn....smile !

........ .......... ........ ....... ......

 

[squeezelouise400]

Sometimes people who don't have either T1 or T2 diabetes make the most stuuuuuuupid comments, based on ignorance and complete lunacy. Try to rise above them, though it is easier said than done. Remember you are a survivor, we have a complex metabolic disorder with can be a full time job and a half....I know what those high bg are like and I also hate the high sugars where I want to sleep all day, but with dose adjustments and help from your dsn and consultant, diabetes can be controlled. You are not alone, there is always many people in the diabetes community who appreciate and understand what your going through.

 

[Katiejinks14]

Hi, I have been diabetic for 13 years and am aged 18 ! I feel depressed and tired all the time about my diabetes and cannot physically make it through the day without having a nap (sounds childish I know) but that is purely down to how rubbish my blood sugars are at the moment ! If you ever want to talk trust me you are not the only one who feels alone and isolated ! Feel free to send me a private message xx