New Type 1 and scared.

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andrew1974

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Type 1
I was diagnosed with Type 1 last Thursday and I am so so scared. I am 37 and have been fine all my life. I don?t have any family history, have eaten a good diet and never smoked or drank alcohol.

I just don?t know why this has happened to me.

I feel like I have been given a death sentence and what to grow old to see my 2 year old daughter grow and have grandchildren. My wife is also pregnant with our second child and I am falling apart with the diagnosis.

I just want someone to tell me that if I look after myself that I will be OK and I will see my children grow old but I am scared this won?t happen

Please please help re-assure me that I can get over this because I cannot fall apart for my wife and children
 
Hi Andrew, welcome to the forum 🙂 It's a difficult diagnosis to receive, especially if you feel you have taken good care of yourself over the years - I was similar, but aged 49 and about to fly off to Stockholm to run a marathon when I was diagnosed and it took a little while to sink in. But you musn't blame yourself - the causes of Type 1 are not clearly known, but it is caused when the body's own immune system attacks the insulin producing cells in the pancreas and very often will strike people who are otherwise fit, active and healthy.

The good news is that it does NOT have to affect your quality of life, or your longevity if you look after yourself, learn how to manage it well and show it some respect. Treatments, monitoring and insulin regimes are a far cry from years ago when much less was known, and it is now possible to control your blood sugar levels so that they are little different to a non-diabetic person. It does take some work and knowledge though, but try not to become overwhelmed by everything - you will learn through experience how to deal with things, and from following the advice of your healthcare team - plus you always have us here to share your thoughts and questions with! 🙂 I fully intend to be fit and active when I receive my 50 year medal from Diabetes UK when I turn 99!

I would highly recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas. It covers all aspects of living with Type 1 diabetes (don't worry that it might not be suitable for you at 37, it is good reading whatever your age!).

Have a browse also through our Useful links thread. If anything is worrying you, please ask - no question is considered 'silly' and we will do our best to help.
 
Hello andrew, i no how you feel and so does everyone else on hear when you first find out, there are many people on here who will give you great advise and help you when you need it, remember it's not your fault just a GLITCH in the matrix in your body! with good direction and aid you will over come this. as i said more educated people on hear will give you advise and help calm your thoughts. chin up pal 🙂
 
Welcome to the forum Andrew 🙂
 
Hi and a warm welcome to the forum andrew
 
A warm welcome to the forum Andrew xx 🙂
 
Hi Andrew

Welcome to the forum, but sorry you've had to join!

I was a little younger than you at diagnosis (21) but thankfully have made it through the next 20-odd years with no nasties.

Be careful what you read on the Internet, most of the stuff about shortened life expectancy etc is hopelessly out of date. Being diagnosed is rubbish, but with modern treatment techniques and equipment you stand the very best chance of a long, healthy, happy and (relatively) normal life

Have a good read around and ask any questions as they crop up.

What treatment regime have you been put on?

M
 
Hi Andrew,

I can reassure you! 🙂 I was 11 months old when I was diagnosed, & back then ('79) the insulins, methods of testing blood glucose etc were pants compated to now...so if you were going to draw this straw, you've picked a good time. I have a 5 & 2 yr old, & fully intend to be around to nurture, protect & generally embarress for decades to come. 😉 The things I've found about diabetes are that: 1) it's like riding a tiger - get lazy or careless & it will bite you in the backside, 2) sadly not all docs or nurses are that helpful so. 3) education, education, education! - don't rely on the nhs alone, read up on it yourself, so you know what questions to ask & how to self manage.

I realise it probably all feels overwhelming & probably like there's not much link between cause & effect at the mo - talk to your diabetic specialist nurse (dsn) about going a 'dafne' course (Dose Adjustment For Normal Eating) or similar - this will give you some basic 'rules' for dose adjusting, what to do if you're ill, exercising, etc. learning Carb counting is well worth thd effort, as recording the carbs you eat, together with the doses of insulin you've had & your blood glucose levels are the only way to spot trends, adjust doses etc.

Finally (i'll shut up in a mo, promise!), your diabetes care should normally br under a specialist outpatient team at a hospital, rather than your gp...gp's csn be great but don't always have the depth of experience etc.

Anyway...sorry if that's overload - I know it's a lot to come to terms with, & with little ones life is hectic, but if you ringfence the time to get your diabetes control good it will impact far less than if you don't (speaking from experience here!). You can do this - you're not alone, this us a great forum with lots of experience.

Finally finally (!), many congrats & best wishes on your impending new addition to the family! 🙂

All the best,

Twitchy
 
Well I was 22 when I got it, and I'll be having my 40th Diaversary at the end of July. No legs have dropped off, no eyes have gone blind, no kidneys have failed; I haven't had a heart attack or a stroke - yet anyway. But there's still plenty of time of course. I've never broken a bone yet either as it happens. I have lost some of my teeth though.

I reckon before you get to my age you still have plenty of water skiing or abseiling time left. (or whatever hazardous activity takes your fancy really) I reckon we are still a lot more likely to get knocked over by a bus than we are to die of diabetic complications.

My (step, admittedly but I'm only 4 months younger than their actual mum) daughters are now aged 38 and 40, their own kids (7 in total) are aged between 22 years and 7 weeks, and the 22yo has a son.

Yes you'll comfortably see your kids grow up!

Chill. There are actually a helluva lot of far worse things we could have.
 
Hi Andrew. Welcome 🙂

Another one here who's reached the ripe old age of 46 after 33 years of T1 without anything more than any other man in his 40s (aches and pains and short sighted 🙄).

I've not been the greatest health fanatic, have never smoked and only drink in extreme moderation.

The best thing you can do for your diabetes and general health is to try not to stress too much and worry less. It's a random, genetic condition that's been lying dormant in your metabolism, waiting for its moment to strike and nothing you did would have stopped it. So it's best to accept it, learn all you can about it (not the horror myths in the press) and ask as many questions as you can think of on here, so you find out the realities from old and new alike.🙂

You'll probably be a lot healthier once you realise how best to manage it, so don't worry about not seeing your kids grow up. 🙂

Rob
 
Thanks

Thank you for the replies. They do make a big difference and I am now reading them to help keep me carm. I have just woken at 3am in a panic just hoping it was a dream and now lying awake scared again because I realise this is a reality.

I want it all to be fixed now but the nurse said they need to bring my glucose down slowly.

I was getting readings as low as 5.6 yesterday but my key was high in the morning at 0.9. I tried lowering my carbs and thought this was the right thing to do as I keep reading to reduce the carb intake. The nurse suggested I eat more because my body is not getting enough energy and the body is using fat to keep me working. She has suggested that I eat carbs and then they will give me more insulin to bring down the glucose once the key are low.

I ate lasagna yesterday lunch time and my reading was 9.3 before evening meal but the key was now low or zero. I guess the nurse was right and hope she will up my insulin tonight. My fear is now that if I don't eat a lot of pasta then I will go hypo which I have not experienced yet.

How much warning of hypo do you get and can these be manged easily.

My eyesight has become really blurred since I found out and started insulin. I have been told this would get better as its just me adjusting to the insulin. Has anyone experience this and know how quickly is goes back to normal.

I have so many questions and want to do everyone in my power to get old healthy.

I am currently taking insulard 2x a day 8 units
 
Hi Andrew, how did you come to be diagnosed? Had you lost much weight prior to diagnosis? I'm guessing that by 'key' you mean ketones - these are an acidic by-product of burning fat for energy and your nurse is correct in that it's important to try and get these down. This will entail eating a good balanced diet and providing your body with sufficient insulin to process both the glucose in your blood (allowing your cells to use it as energy) and to process the ketones out of your body. This should not take too long of eating normally and getting the necessary adjustments to your insulin. You don't need to go overboard on the carbs, but it would be a good idea to start a food diary and record the amount of carbs that are in the food and drink you consume each day - this will be very useful for future reference.

Hypos generally give very good warning symptoms. You may feel sweaty or shaky, and maybe a little disorientated - these are common symptoms, but you will learn what your own particular signals are. If you should feel out of the ordinary, then test your blood sugar levels. If you are below 4.0 mmol/l then have something sweet - the recommended amount is something sugary and containing around 15g of carbs, so I find 3 jelly babies matches this for me. Some people will prefer to drink 150ml of full sugar coke of lucozade. You will usually very quickly feel much better, but test again after 10-15 mins and check you are now above 4.0 mmol/l - if still below then repeat the treatment. One thing to bear in mind is that you may feel symptoms even though you are above 4.0, this is common when you are newly diagnosed and your body is returning to more normal levels after being high prior to diagnosis. In this situation just have a small amont of sugar - say 1 jelly baby - and this should stop the symptoms without raising your levels too high.

It will take a little time for you to become more settled, as you recover from how you were at diagnosis and get the balance of insulin and carbs right, so don't worry that things don't happen instantly - it's more of a marathon than a sprint! The same goes for your eyesight - it will take possibly a few weeks for it to return to normal and is due to the high levels of glucose distorting the lens of your eyes - but it WILL return to normal. I ended up having to use a magnifying glass or increasing font sizes on the computer for a few weeks!

One final thing, and you don't need to worry about this at this early stage, you should ask your nurse about going onto a basal/bolus, or MDI (Multiple Daily Injections) insulin regime as this will give you greater control and flexibility with your eating and your lifestyle.

Do ask us any questions you have and hopefully we can reassure you that you CAN do this and it will become much more routine and less of a daily drama for you. You certainly sound very motivated to succeed so you are off to a head start 🙂
 
thanks

Thanks for taking time to re-assure me. I feel like I need telling it will be OK several times a day just to keep me from falling apart at the moment.

I went to the doctors in Jan because I had been getting aching under my left arm pit and was getting nerve pain in my foot and arm. I was worried then that it might be something serious like cancer or Diabetes. They took blood test then but forgot to fast before the test

The test results came back and they said that the blood sugar was high, but as I had eaten something before I should take it again. To be honest I was relieved that it was not cancer so never went back which I know I should have now.

About 4 weeks ago I noticed that I was enjoying drinking more. I did not feel particularly thirsty. I just thought I was enjoying drinking. I was having a lot of stress at work so just thought it was a reaction to this. I also noticed I was going to the toilet a lot. I then started to lose weight and people started to comment how thin I was looking in the face. I also started to notice that I was losing it on the body

I just want to get the weight back on and feel normal again, but don?t feel this will ever happen. I am getting so many negative thoughts about the future that I am not sure I want to face it.
 
Please DO request that you go onto multiple injections Andrew - otherwise you are going to be stuck with totally unflexible mealtimes and being forced to consume exactly the same amount of carbohydrate at those set times and frankly, life seldom works like that. It may sound truly awful having to have more jabs but you know, it's worth it so you can do what you want when you want to do it, rather than having to obey the rules the insulin sets down.

Once you can get onto such a routine, in a very short time you will learn to merrily adjust your own doses just like the rest of us* and not have to wait to see the nurse or doctor.

* NB this is the way it is for Type 1, it is not because we are naughty or anything!

Eyes - mine took about 6 to 8 weeks to sort themselves out. Just about drove me potty, I couldn't read, knit, sew or watch telly. Couldn't work because being as I had a clerical job, I couldn't see to do it. It wasn't just blurred for me, what it was, was that they wouldn't focus properly. I could MAKE them for a few minutes, eg to read the graduations on an insulin syringe, but that was my limit.

It gradually improved after the first 4 weeks.
 
One very important thing to mention Andrew, is that when your sugar levels are high, it's common to feel pants emotionally as well as physically - so feeling negative about the future in a sense is natural (after all,diagnosis probably does feel like a loss & life will be different now) but the key thing to hold onto is that as you get back to normal sugar levels, you will feel better in every way. As Northerner says, in time going on to MDI will give you more flexibility & with care you can do anything - I know someone who walked to the south pole! 🙂

That said, there is also an association between D & depression, so if you continue to feel bad emotionally, or if you start to feel worse about the future, please do speak to your gp - maybe counselling would help you come to terms with things. Please believe me, you have a wonderful life in front of you, a beautiful new baby to look forward to and a lot of support here as & when you need it. You'll get there, and d'you know what? I bet in a while you'll be able to reassure others in turn! Hang on in there Andrew. ((((no hug icon, so here's a hug in words instead lol)))).
 
andrew1974 said:
...About 4 weeks ago I noticed that I was enjoying drinking more. I did not feel particularly thirsty. I just thought I was enjoying drinking. I was having a lot of stress at work so just thought it was a reaction to this. I also noticed I was going to the toilet a lot. I then started to lose weight and people started to comment how thin I was looking in the face. I also started to notice that I was losing it on the body

I just want to get the weight back on and feel normal again, but don?t feel this will ever happen. I am getting so many negative thoughts about the future that I am not sure I want to face it.
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This sounds pretty much like me - I lost about 20 pounds over 18-24 months after a very stressful time at work, peeing more, drinking huge amounts but put it all down to other things. Then I caught a virus and dropped another 17 pounds in 4 days and got diagnosed. So, before all this started I weighed 11st 4. Before the virus I weighed 9st 7. At diagnosis I weighed 8st 4, but now, and with a a few ups and downs I weigh 11st, so I am back to 'normal' for me.

There are many great examples out there of how Type 1 diabetes doesn't have to get in the way - have a look at Team Type 1 for example - not just any old team of cyclists with Type 1, but one of the top teams in the world. Many of our members have run marathons, trekked across far reaches of the earth or engaged in all sorts of other activities and achievements - no reason whatsoever that you can't by just the same. It may seem a long way off and everything is new and scary and confusing right now, but in a few short weeks I'm sure you will be surprised at how much better you feel, and how much happier and more confident you are about the future 🙂
 
andrew1974 said:
My eyesight has become really blurred since I found out and started insulin. I have been told this would get better as its just me adjusting to the insulin. Has anyone experience this and know how quickly is goes back to normal.
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I am normally really short sighted and my eyesight went the other way, for about 3/4 weeks I could actually see without my glasses. I thought may be diabetes is not so bad if my eyesight is fixed but it did not last.
 
Hi Andrew, and welcome to the forum. You are still very obviously reeling from the shock of your diagnosis. It is a big thing at any time in your life, and I'm sure truly terrifying to begin with.

You have done a wonderful thing discovering this forum so early on though. It really is an excellent source of information, friendship and support, and in no time you will find yourself giving out advice to other newbies too. Keep on visiting here for more advice, support and to vent any feelings you have. Everyone is so helpful and supportive.

Just take each day at a time at the moment. There is so much information overload at the start, and well meaning friends who think they know so much more than you start giving tips about what you should and shouldn't do and what will happen if you don't. They invariably get it wrong. There is so much ignorance about it as you will soon find out.

It's very early days for you still, and you will find it very bewildering and scary to begin with, but truly things will begin to settle down for you before too long. Life really does go on. There is no reason on this earth why you shouldn't see your children grow up and see grandchildren. As others have said, the improvements in diabetic care have come on so much in such a short space of time, the outlook really is good. This forum has many 'old-timers' (please don't hit me!!) who have grown up with T1 and are still going strong. Good control, good management, and you will go from strength to strength.

It's early days yet, you will soon get the hang of things. Just hang on in there.

Tina
 
Going back ages on another forum we actually did a rough calculation of how many years experience of D we had if you just added up everyone's individual experience. In 100 or so active members at the time including all the current newbies where we usually knew exactly, we had summat ridiculous like 1200 years !
 
Slightly surprised that you mention Insulatard twice a day as a T1 - did your team give any reason why they chose that rather than one of the mixeds? (though as others have said - as T1 you'd really want to be on MDI for added flexibility and more accurate control)
 
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