Life with Type One Diabetes.

[Ambersilva]

Hello jdmOwen

Diagnosis in 2009 was a surprise for me rather than a shock. I felt so unwell that I thought I was ailing with something much more serious. Now I eat tasty food usually without a carbohydrate overload. I have learnt how to be prepared in advance so that I can do spontaneous activities by being organised with everything I need ready to grab and go. I drive. Yes, I have to renew my licence every three years. But that's no big deal.

Recently, I was at a 'dress to impress' event. I managed to pack all my essentials in a small evening bag 5x6x1.5 inches. That included 2 pens, glucose meter, lance and strips, jelly beans, CGM receiver, hairbrush.and a phone.

A male relative also has T1. He eats well, drinks alcohol and injects appropriately. With a group of friends he undertakes day long cycle rides and takes everything he needs for the day in a cyclists back pack.

I have recently discovered that a relative was diagnosed with Pancreatic Cancer. The outcome for the relative was bleak and rapidly terminal. I consider myself fortunate to only have to control diabetes and not to have diabetes control me..

 

[noblehead]

Thanks @Spiker and @noblehead not a lot of people realise the emotional effects of the illness. I've got a diabetic clinic at the hospital in my city which I've been to, they do help and I appreciate it but they don't fully understand how I feel unlike others who've been through the same. Hence my use of this site y'know

No one can appreciate how difficult it can be to manage and cope with a life-long condition like diabetes, I expect we didn't know ourselves before we became diabetic.

That said the hospital diabetes teams are well-versed in dealing with these problems in clinic or can refer people for counselling if need be, there won't be much they've not heard or dealt with before so do seek further help Owen.

 

[Spiker]

Echoing @Ambersilva and others, one of the things I used to cheer myself up with is the fact that there are much worse diseases to get. I very seriously thought I had late stage cancer, and so did my family and friends. Everyone was relieved that it was "just" T1 diabetes. OK, it's a burden and a challenge. But it's not a death sentence like so many other horrible diseases out there. In a sense, we really are the lucky ones.

 

[donnellysdogs]

Echoing @Ambersilva and others, one of the things I used to cheer myself up with is the fact that there are much worse diseases to get. I very seriously thought I had late stage cancer, and so did my family and friends. Everyone was relieved that it was "just" T1 diabetes. OK, it's a burden and a challenge. But it's not a death sentence like so many other horrible diseases out there. In a sense, we really are the lucky ones.

We are actually lucky.. I think that majority of the time. I am grateful that the NHS do regular check ups on me, and I have always managed to stay slim and lean. So many other illnesses are harder to identify and to self manage.

At moment I look at my neighbour who had throat and neck cancer and horrendous treatment (told it was inflamed glands by GP) and the consequences and treatment he has gone through and will have to live with and honest... I now think myself lucky every day.

I know you are very young, and it is a struggle, but you sound as if you have got a hidden strength to you in there just wanting to come out and overtake the feelings of being so fed up with D.

The fact that you want to do certain things is great, you're discussing them and nothing is off limits with your wanting to do any of these things. It's just finding the way to do them. It is possible. Honest. I still think as far as exercise etc goes then a pump may be a good consideration.

 

[ElyDave]

Focusing on the negatives is all too easy, so let's look at some of the positives.

Firstly, diabetes IS manageable. I have had diabetes for almost 25 years, and it has never held me back. I regularly cycle. I trekked 80km in the French Pyrenees. I went to university, lived the student life and came out with a 2:1 honours degree. I'm not saying it's easy, but with the right training, diabetes can become just a normal part of life, not able to ruin anything. Plenty of diseases aren't like that. Last year I played for a concert raising money for osteoporosis. A woman spoke about her experiences with the disease. She has lost a number of inches in height because her vertebrae have crumbled. She has had more bone breaks than she can count. The slightest fall can mean months of recovery.

I treat my diabetes like my tax return. If I ignore it, it will spiral out of control, and quickly come to ruin my life. If I keep accurate records, monitoring and inputting info as needed, it's a much simpler process. Do I enjoy doing my taxes? Not at all. But it doesn't ruin anything for me. Diabetes can be the same.

The way you are feeling means that you want more control over your life. Wishing for a cure unfortunately does not solve anything at the present time. But there are ways you can win against diabetes, and this will improve your quality of life immeasurably. Part of your poor moral feeling is down to big swings in blood sugars. If you are anything like me, lots of highs and lows cause horrible changes in mood. This leads to the question some never manage to answer? How does one manage their blood sugars well?

The last six months have been the happiest I have ever been with my diabetes. This is all down to my starting to follow a low carbohydrate diet. It sounds extreme. When I first decided to try it, I thought I was missing goodbye to any enjoyment of food. How wrong I was. I enjoy what I eat so much more now. And it satisfies me in a way high carbohydrate foods never did. I can't begin to tell you how much more free I feel now. High blood sugars are now a rarity for me. I consider anything above 7.8 now to be unacceptable, because I hardly ever go above that any more. My last HBA1C was 37 (which I think is about 5.4 in old money). According to my blood test meter, my 90 day average is 5.7. And I don't have many hypos.

If you are interested in this way of eating, I would suggest you do some research into it. Many who eat this way consider Dr Richard Bernstein to be the leading authority on this. He is a diabetic who has followed his own diet for more than 40 years. He is almost 80, and is in great health. His book can be difficult to read at times, but it is so worth it. I would also suggest watching this video

. The speaker is an Australian doctor, who was diagnosed with type 1 diabetes in 2012.

Always remember that you can do this. If you start to take pride in your blood sugar results, there really is no stopping you. The very best of luck, and keep posting.

********.

There are no positives.

Compared with this time last year, with an HbA1C of 40, and weight exactly the same as pre-diabetes 18 months ago (diagnosis 14 months ago); now
- 5 injections and minimum 7 blood tests a day
- I can't simply exercise as I want
- fitness has suffered
- excess carbs consumed to accomodate exercise induced hypos
- post exercise and other random highs causing mood shifts and general shittiness
- need to watch what type adn how many drinks I have - not in case them get me drunk, but in case they affect my blood sugars
- I now have a wardrobe full of cargo shorts and a man-bag to carry all the **** I need just to leave the house and go shopping on a Saturday

Control over my own body dimished, freedom to act diminished, pain in the **** factor exponentially increased
Time invested to just stand still in health and fitness - significantly increased

Why would I feel happy about having T1 diabetes?

 

[ElyDave]

Echoing @Ambersilva and others, one of the things I used to cheer myself up with is the fact that there are much worse diseases to get. I very seriously thought I had late stage cancer, and so did my family and friends. Everyone was relieved that it was "just" T1 diabetes. OK, it's a burden and a challenge. But it's not a death sentence like so many other horrible diseases out there. In a sense, we really are the lucky ones.

********

the lucky ones are the ones that go through life entirely healthy with no disease whatsoever.

We are marginally less unlucky than soem others.

Let's not forget, people have bits fall off, for blind and die from this condition. Just staying alive and realtively healthy long term is somewhere between an art, science and black magic

 

[ElyDave]

What's with the censorship?

 

[Spiker]

All your points are valid, @ElyDave. We all feel like that sometimes. I certainly do.

The question isn't whether we should be happy to have diabetes. Clearly not, and no one is saying that. Just to consider if our glass is bone dry, or still perhaps three quarters full.

OP is feeling very down and depressed about it. Maybe you are too.

 

[Spiker]

What's with the censorship?

Did your post get deleted?

 

[ElyDave]

Did your post get deleted?

no, my naughty words like ******** and ******** got *****'d

 

[Spiker]

********

the lucky ones are the ones that go through life entirely healthy with no disease whatsoever.

We are marginally less unlucky than soem others.

Let's not forget, people have bits fall off, for blind and die from this condition. Just staying alive and realtively healthy long term is somewhere between an art, science and black magic

We have been dealt a tough hand, to be sure. But there are terminal illnesses that are as prevalent or more prevalent than T1D. Many of those have grim trajectories and many of them have the added agony of almost total powerlessness for the sufferer. Our disease is dangerous but not (necessarily) terminal, and we have a huge amount we can do to influence the course of it.

 

[Spiker]

no, my naughty words like ******** and ******** got *****'d

Oh that's automatic. As far as I know you can say fecking fecked fecking fecker, but not ****.

 

[Spiker]

Oh that's automatic. As far as I know you can say fecking fecked fecking fecker, but not ****.

Oh well apparently you can say ****. **** me!

 

[ElyDave]

Oh well apparently you can say ****. **** me!

that's ******* unfair

 

[Spiker]

no, my naughty words like ******** and ******** got *****'d

I thought your rows of asterisks were just some kind of punctuation.

You can Edit the post and switch a few characters and it will get uncensored. Then the world will know whether you thought I was talking b0ll0cks or bullsh1t.

 

[Heathenlass]

Please don't tempt me to try and find out what I can and can't get away with !

Signy

 

[ElyDave]

We have been dealt a tough hand, to be sure. But there are terminal illnesses that are as prevalent or more prevalent than T1D. Many of those have grim trajectories and many of them have the added agony of almost total powerlessness for the sufferer. Our disease is dangerous but not (necessarily) terminal, and we have a huge amount we can do to influence the course of it.

don't disagree with this post or your previous one, but with my rational, engineering head on yes I have relative "control", but I'd rather have the free abandon of 18 months ago given the choice.

I wouldn't say I'm depressed about it, I'd say I'm still effin' annoyed about it.

 

[donnellysdogs]

I can honestly say that I am not unhappy having T1.

I have been previously when almost losing my licence though, so I do understand.

Honestly, I look around and see others that can't do half of what I do and they aren't diabetic.

Diabetes has given me a chance to help myself with my own health and not wait till I'm 60 before being told I've damaged myself!! And thats what I think I would have done if I wasn't T1.

I would be eating the same rubbish as others, I wouldn't be active in my community as I am now.

The research done by Southampton University (advertised on this forum) was interesting as it was being used to ascertain how people with critical illnesses assessed themselves and the way these people assesed what was being said to them by medical persons. Basically trying to assess if you were happy and positive you would go for the happier more positive medical persons advice.. Or if you were negative and unhappy that you would steer towards the advice of negativity from the other medical expert.

There are a lot more people worse off than me and unable to get their health problems managed. The childrens ward programme a couple weeks back had a young lad on it with cystic fibrosis who just wanted to have a sleepover at a friends. It was heartbreaking seeing what he had to live with and to know how reduced his life expectancy was going to be.

Yes, T1 is sometimes a PIA but honestly 100% I am not unhappy about being a T1.

 

[Spiker]

Tartary F*ckwit, more like.

Spam elsewhere, please, spammer.

 

[Spiker]

Spammer, you're breaking the law. They hang you for that in Singapore, right?