Diabetes has ruined my life

[ExtremelyW0rried]

I don't regret them for my sake, I regret them for theirs.

 

[Emily95]

Hi,
If the mother is type 1 diabetic, there is a 1-4% chance the child will be type 1. If the father is type 1 diabetic there is a 4-8% chance the child will have type 1 diabetes. This is the same for each child you have, first child, second child, third child, the chance with each pregnancy is the same.

 

[NoKindOfSusie]

This is depression talking. There are many perfectly healthy T1s on here who've been T1 for 40 years or more

No it really isn't.

I don't mind taking novorapid (well I don't exactly relish it but if that was the worst of it I could deal.)

Lantus is horrible chemical poison that makes me feel like lying in bed all day, from 2 hours to about 6 or 7 hours after I take it. I am being forced to poison myself.

You have no idea how long I'm going to live or what's going to happen, I have no idea whether I am even vaguely doing this right. The medical people clearly have no idea how to really treat it and will not give me any concrete information so what am I supposed to think.

 

[ickihun]

In fact IMO part of why it is becoming more common is because t1s are told now they can have children whereas they probably either didn't have them or didn't live long enough to have them in previous years.
So the genes are getting more common and will continue to do so as long as people with t1 have children.

In my experience LIFE finds a way.

We would go extinct then as we all have one faulty gene or another. None of us are perfect. The kid's dad won't be either, irrespective of type1.
Your self worth is through the floor. Does no one ever tell you how wonderful you are?

I remember seeing your other posts and your input has been invaluable, in this thread too.
I expected you to be a male poster because of your confidence in your opinions and I guess I may have detected a little detachment from motherhood due to your depression which males learn rather than instinctively have.
If its any help I didn't bond with my last baby but I'm pleased to say we have now. It's never too late.
You need help and support first.
You are missing the joy from your children which is heartbreaking.
I would like than for you in 2018.
I'm going to wish it on you. They are a natural happy pill in themselves.

I know you are crying out for help. Your GP has that help immediately for you. Free.

Please please please call your gp in the morning and tell him/her everything just blurt it out, anyway you can. They have seen everything so they won't find you silly or weak.
It won't reflect on your kids. Only if you refuse help to keep you or kids safe.
You deserve this help and support.
You are worth it, by far.

I know your worth helping and making your happiness more important than perfection in hourly bgs.
You are more important than your type1 diabetes. It has to come second.
You are no.1 and has to be to care for yourself and kids hun.

You can make this change with professional help (GP).

PLEASE PLEASE CALL THEM IN THE MORNING.
we are here in the interim.

 

[Leeannea]

Do you think that perhaps your children may not be having a happy childhood now, regardless of whether they get diabetes or not, as your sole focus is on yourself and your anger at having T1D Perhaps you should shift your focus to them and their need for a happy mum.
Just imagine that you didn’t have T1D but one of your children did, and they were reacting as you are now, would you reinforce this mindset, and believe that it would lead them to have a productive happy life?
Just try to find things to be positive about.

 

[EllieM]

NoKindOfSusie, I'm sorry that lantus doesn't agree with you and your diabetic clinic is being useless. (I guess I've been luckier with my doctors). Have you told them what you feel about lantus and asked to be put onto a different long acting insulin? (Or long term, when you're stabilised, a pump?)

 

[Grant_Vicat]

Yes I hugely regret my kids. I was told about 1 in100 risk given my own circumstances (age on diagnosis, age when had children) but no one seemed to take into account I am second generation t1. Turns out it lots higher. Maybe as much as 50%. So there's a good chance I've ruined their lives too. They'd have been better off not being born and given the time again I absolutely wouldn't be so selfish as to have them so I can see why you feel as you do. I always wanted children so I'd had been very sad not to have any but I can see now how selfish that was of me and ultimately if either of them are diagnosed that will be much much worse than not having had them in the first place.

Again, putting things into perspective and from one who had Type one throughout childhood at the age of 11 months, I shall leave the ending of my book Fifty Years of Malfunction. I hope your children would feel much the same as I did at the age of 55 when I wrote this to my father, as it turned out 6 months before he died:

While convalescing at Stephanie's house, I was informed by my stepmother Sheila that my father wondered whether he had done the right thing by sending me to hospital in 1959. When I asked him why he had said this, he replied that he thought I had had a rough ride. Therefore I wrote the following, which happens to reveal even more of my eccentric childhood:

Ixworth 29th September 2013

Dear Duds,

It was good to talk to you this morning. As I mentioned, I thought I would put down some thoughts concerning your anxiety about making the right decision on 9th July 1959. I have never doubted that you did the right thing. Some of my earliest recollections date back to before we moved from Adur Avenue.

I remember you knocking over Mrs Greenyer's dustbin with the Bentley and watching it roll down the drive. Also my favourite record and movement in particular was the slow movement of Brahms' First Piano Concerto played by Kempff. I also recall moving house in the Bentley sitting in the back with a section of train set perched at 45 degrees so that Giles and I were able to shunt trucks down, giggling all the time.

On reaching 337, the garden was so wild, with straggly raspberry bushes growing in what looked like a storm-damaged cornfield with 3 apple trees (conveniently we owned 1 each), a damson tree, and a huge privet hedge which we could crawl through and hide inside. I remember Johanna, at the age of three, biting into an apple while perched in the fork of the biggest tree, and Giles and I pointing out that it had a slug (I now think maggot) and an ant in it. With that she grinned and shoved the rest in her mouth. I also, at a similar age, remember her being the only one of the three of us being brave enough to go and find your Thor copper mallet with which she squashed a large wasp on the kitchen doorstep. I also remember that for years there was a completely flattened wasp in the same door's hinge plate. I would guess that the garden was nothing but a burden as far as you were concerned, but to us it was magical. As there were at first 2 pianos in the house, I think it was inevitable that I would be sucked into music, even if played badly. Whatever the standard of playing I very much enjoyed the challenge of trying to run before I could walk.

Complaining of boredom never met with sympathy, and I remember Mummy saying “There's plenty of drawing paper, books to read, trees to climb or a piano to play”. Of course she was right and I have never regretted her stance. Sometimes we would walk along to Buckingham Park or up to Erringham Farm, playing tollybonks1 or looking for newts in the dewponds. In many ways we enjoyed a very liberal childhood. A little later came the go-cart... Even though I damaged myself on more than one occasion by taking a bend too quickly or falling off the back while acting as co-pilot, I had enormous fun on what became a Silver Cross Brescia Bugatti. I also loved exploring the finer parts of south-east England in whatever car we had at the time. Directly resulting from this I often turn off down tracks having no idea where they might lead, but I am able to rely on a grid system to keep my bearings. I remember you stopping at tiny churches, mainly in the hope of finding an unlocked organ. We enjoyed both playing and pumping the bellows on many of them. Resulting from listening to Widor, Schweitzer and Power-Biggs, this directly influenced a whole future career both at Lancing and beyond. I have made so many wonderful contacts in the organ world including the Directors of Music of Rochester, Ely, and St Edmundsbury Cathedrals as well as Southwell and York Minsters (The latter of course being Francis Jackson) not to mention Anne Page, Hans Hielscher of Wiesbaden Marktkirche, Martin Setchell (Organist of Christchurch Town Hall and Cathedral, New Zealand) for whom I am a reviewer, and Jean Guerard, who is the Chairman of La Societe des Amis de Leonce de St Martin (Vierne's Successor at Notre Dame) on whose committee I represent GB [See note on next page]. I also have an open invitation to play at St Magnus the Martyr, London Bridge. In addition to all this I have also played on a wonderful Cavaille-Coll at St Omer Cathedral.

All this is enough to have made life more than worthwhile. In post university years I have enjoyed organ building and 19 years of teaching, travelling abroad and touring all over England, Wales, Scotland and Southern Ireland. I have had the joy of seeing Stephanie flourish and become an excellent mother to gorgeous Amelia, as well as continuing the long line of Vicatic musicians. It looks as if Amelia will follow suit. Time will tell.

When looking at the darker side of a longer life than any medic predicted, I have been blessed by remarkably nice carers and doctors, including during the epic stay in Southlands in 1966. Oddly I felt pampered, probably because I was the only child walking about the ward and thus able to help the nurses.

This has continued right the way till now. I have had over 150(2)cards, messages and prayers, including past pupils and even from an American author(3) (for whom Helen does the illustrations) who sent me a signed copy of one of her latest works with a lovely message on the title page.

In short I have felt a great sense of achievement every time I celebrate another birthday and enjoy chalking up the years.

Thank you for making the right decision in 1959 and also for all the support in the ensuing years. The good has far outweighed the bad.

Lots of love to you both,

Grant


Adur Avenue, at the end of the first paragraph, refers to 6 Adur Avenue, Shoreham-by-Sea. My mother's brother Jack moved there once we had left.

337, at the beginning of the third paragraph, refers to 337 Upper Shoreham Road, Shoreham-by-Sea.

(1)Tollybonks are pulled up handfuls of stubble with a large blob of clay, which fly through the air impressively

(2) Actually 255

(3) Caroline Lawrence

Since writing this, and with reference to L'Association des Amis de Leonce de Saint-Martin, the initial correspondence stated "Membre du Conseil", but I have discovered that this is certainly not the case, although I am however a paid up member.

 

[NoKindOfSusie]

400 times.

NoKindOfSusie, I'm sorry that lantus doesn't agree with you and your diabetic clinic is being useless. (I guess I've been luckier with my doctors). Have you told them what you feel about lantus and asked to be put onto a different long acting insulin? (Or long term, when you're stabilised, a pump?)

400 times.

I am not interested in a pump, I feel like enough of a weirdo already, the last thing I need is to be an actual functioning cyborg on top of that.

 

[NoKindOfSusie]

one who had Type one throughout childhood at the age of 11 months

Well that makes it a bit easier doesn't it.

 

[ExtremelyW0rried]

Haha im a cyborg.
My life now depends on what is essentially a mobile phone.

 

[Fairygodmother]

NoKindOfSusie and ExtremelyWOrried, I feel very sad reading about the black dogs that are sitting on you both.
ExtremelyWOrried, have you been on a Dafne course (or whatever it's called where you live) or looked at Bertie online? Food can be enjoyable, you can take charge of it, not it of you.
NoKindOfSusie, there are alternatives to Lantus - it doesn't suit everyone. Time to find a doctor who'll explore them with you.
I may be out of order here but you've both given yourselves victim status. Not good.
Sure, we can all have times when T1 really gets us down - I'm just emerging from what seems to be a long sequence of 'bugs' that've altered insulin needs and the fight to overcome this has been tough so I too have ranted and raved and had to forego meals and wake frequently to test. Luckily my friends are still speaking to me despite a period when the T1 was much too important for fun.
But - a big but - knowing life can also be good kicks victimhood out of the room.
What do you enjoy? There must be something? How will you make sure T1 enjoys it too?
I've had it for 48 years now. I'm in my 69th year and have already let my two lovely daughters (neither of them has T1 and both have successful careers, have travelled, are funny, naughty, wise, energetic) know what I want to do for my 70th. We'll hire a barge and go down a beautiful canal and even if we steer it into the bank and all fall in the water it'll be fun. Luckily my two small grandsons can swim.
What I'm trying to say is that T1's not, in itself, a reason to be gloomy.
Please seek help. Please look at what you can do to change the way things are for you both right now, even if it's just small things to begin with.
Modern medicine's given you life. Please don't give up, please seek help. And a hug for each of you too xxx

 

[ExtremelyW0rried]

NoKindOfSusie and ExtremelyWOrried, I feel very sad reading about the black dogs that are sitting on you both.
ExtremelyWOrried, have you been on a Dafne course (or whatever it's called where you live) or looked at Bertie online? Food can be enjoyable, you can take charge of it, not it of you.
NoKindOfSusie, there are alternatives to Lantus - it doesn't suit everyone. Time to find a doctor who'll explore them with you.
I may be out of order here but you've both given yourselves victim status. Not good.
Sure, we can all have times when T1 really gets us down - I'm just emerging from what seems to be a long sequence of 'bugs' that've altered insulin needs and the fight to overcome this has been tough so I too have ranted and raved and had to forego meals and wake frequently to test. Luckily my friends are still speaking to me despite a period when the T1 was much too important for fun.
But - a big but - knowing life can also be good kicks victimhood out of the room.
What do you enjoy? There must be something? How will you make sure T1 enjoys it too?
I've had it for 48 years now. I'm in my 69th year and have already let my two lovely daughters (neither of them has T1 and both have successful careers, have travelled, are funny, naughty, wise, energetic) know what I want to do for my 70th. We'll hire a barge and go down a beautiful canal and even if we steer it into the bank and all fall in the water it'll be fun. Luckily my two small grandsons can swim.
What I'm trying to say is that T1's not, in itself, a reason to be gloomy.
Please seek help. Please look at what you can do to change the way things are for you both right now, even if it's just small things to begin with.
Modern medicine's given you life. Please don't give up, please seek help. And a hug for each of you too xxx

But how would you have felt if either of your children had been diagnosed? I think that would have changed your outlook.

Perhaps I do feel like I'm a victim, I certainly felt that last night when looking on FB at photos of people who used to be friends going out and enjoying themselves. Meals, drinks, parties. I went to bed early having eaten nothing because I can't eat anything anymore, then had to wake and set my alarm every hour and a half to check my blood sugars.
How lovely it must be to just want to do something and do it. By the time I've considered an invitation for something and worried about the possible outcomes I usually decide not to go. People don't bother asking me to do anything anymore because they know I will say no - although I don't cite my diabetes as the reason.

 

[Fairygodmother]

Why can you no longer eat? I hope I haven't been too blunt.

 

[Grant_Vicat]

Well that makes it a bit easier doesn't it.

Not really!!

 

[NoKindOfSusie]

Not really!!

How would you know

 

[kev-w]

But how would you have felt if either of your children had been diagnosed? I think that would have changed your outlook.

Perhaps I do feel like I'm a victim, I certainly felt that last night when looking on FB at photos of people who used to be friends going out and enjoying themselves. Meals, drinks, parties. I went to bed early having eaten nothing because I can't eat anything anymore, then had to wake and set my alarm every hour and a half to check my blood sugars.
How lovely it must be to just want to do something and do it. By the time I've considered an invitation for something and worried about the possible outcomes I usually decide not to go. People don't bother asking me to do anything anymore because they know I will say no - although I don't cite my diabetes as the reason.

Can I ask how you felt about your diabetes before going onto a pump? And also what differences you're experiencing now, to then in regards eating?

I'd not want to use a pump, 33 years and I'd prefer to stay injecting, but that's just me also thinking cyborg although I'd wear a libre if they put them on prescription.

A good friend of mines bairn was diagnosed T1 aged 11, they struggled and were offered a pump, but to me (and them) it wasn't the all singing dancing gizmo it was portrayed to be, and 6 months on the bairns back injecting and the pumps no longer used, so it's something to think about.

As far as your kids go, all you can do is enjoy them, now and forever, who's to say if they get sugar? The time to switch on to that is if they do, but in the meantime (and you'd hope forever) all you've to do is worry about helping yourself put your best foot forward, and I say that having 3 myself, being an adopted kid not knowing if it's in the 'family' and my youngest having a condition called Lichen sclerosus which is an auto immune system fault.

Every day's precious so best wishes for the new year.

 

[catapillar]

@ExtremelyW0rried your diabetes hasn't ruined your life. Your attitude towards your diabetes is doing that. If you didn't have diabetes you would surely find something else that would be the end of your world.

Your hba1c is perfect. If you are cancelling plans, refusing to eat because of high blood sugars, refusing to go out and socialise because of fear of high blood sugars that's not your diabetes, that's you making those decisions and making those choices and allowing those fears to overtake the reality of the risks. The reality of the risk being with a hba1c like yours you risk of diabetic complications is negligible, that it's possible to maintain your perfect hba1c with 30% of your readings over target, than non diabetics will also occasionally get readings well over the targets that you set for yourself. If you know you're a perfectionist and seeing readings over target causes you so much distress that you are cancelling doing things then you need to 1) remember 30% of readings over target will still result in perfect hba1c and 2) set yourself a different goal, get yourself a libre and look at something like time in range instead.

This paper is helpful on why perfect blood sugars don't need to be the aim - https://www.ncbi.nlm.nih.gov/pubmed/28763121

You really should be looking into some psychological support to adjust your attitude and your thinking so that one bad reading isn't basically giving you suicidal ideation. You aren't better off dead than type 1, you are better off alive with type 1, you just need to adjust your thinking to deal with it. Seek support from your GP for a bit of talking therapy/CBT (there are psychologists specialising in treating people with chronic conditions) and antidepressants.

 

[Antje77]

Lantus is horrible chemical poison that makes me feel like lying in bed all day,

I hated my lantus as well, although it didn't bother me as much as it does you, so I simply asked to switch to another long-acting. I'm happy with tresiba.

 

[tigger]

@ExtremelyW0rried i'm not sure anything any of us say is going to help you or be heard by you unless we are confirming your negativity. Please show this thread to someone you trust or your Consultant and get their views. For your children's sake if nothing else. The legacy you'll leave them with your current state of health is to put it bluntly far more damaging than type1.

@NoKindOfSusie you're relatively newly diagnosed and that's very difficult. It's a big shock to deal with and something you have to mourn as your life has changed. Have a read about the 5 stages of grief and you may find it resonates. No a happy pill won't make it go away and you need time to work through this. But do you want to go through the rest of your life feeling like this? Everyone encounters difficulties in life, illness both less and worse than t1, divorce, death of a loved one, economic ruin or even what to some may seem minor difficulties. How you deal with this and what you learn from it is part of your life's tapestries. Everyone needs different things to shake them out of lows and access or build their resilience. Whether it's chocolate, meditation, exercise or a hug.

Regarding feeling physically bad you're just at the beginning of the journey but my core principles are the key to good control sits with me and the expert on my diabetes is me. I live with it 24/7 and I know it and my body best. I'm telling you now as someone coming up for 35 years of this disease that I don't feel the way you describe. I'll also tell you that medical professionals do not listen to patients. You need to educate yourselves in the basics of how to deal with t1(carb counting and read think like a pancreas) and argue your case for trying different insulin. There are plenty out there. Also take friends or partners to appointments with you. It helps. Don't accept brush offs and seek advice here. The experience on here is great and varied and often way more than consultants who only see a small % if t1s. Plus we get back far faster than a 3-6 month appointment. Good luck it will improve.

 

[Sue192]

A T1 friend of mine has a pump. She tucks it into a colourful baby mitt and then into her bra. Before she had it she was having great difficulty controlling her levels which didn't make her job as head of department in a busy school easy. She travels, she has a wonderful grown-up son, she does all sorts of things. Not for one minute does she consider herself a cyborg. Why would she? Is it not similar to a pacemaker? I know that for some pumps do not work but for her it has been a godsend. I have another dear friend whose second kidney transplant is failing. He takes all manner of strong drugs and then more to counteract those drugs. He has peripheral neuropathy and many other life-threatening health issues. He has two children and three grandchildren, holds down a very stressful and demanding job, and tries to live as good a life as possible. I know the danger of telling stories like this to those who are in depression and cannot see their way out - you are not living their life nor they yours - but they have both had counselling, including CBT, and it has helped them enormously. The first step to seeking counselling is extremely difficult; but as others have urged, please at least go to your GP. Life is beautiful, whether it is shaded by illness or other things; take joy and comfort in your children (some of us have long yearned for but cannot have children) and know that there is support and love out there. I wish for you to find peace and acceptance in this new year.