Life with Type One Diabetes.

[jdmOwen]

Hello, I'm commonly known as Owen. I was diagnosed with the cruel disease that is diabetes mellitus in August 2009. Living with diabetes feels like I'm on a rollercoaster that will forever ascend. It never gets easier. It's the bane of my life. I want to eat/drink something with carbohydrates, oh better inject myself. Oh wait, I inject myself four times a day, sometimes more and now the result of that is: I have lumpy areas of skin so the insulin will not be delivered efficiently. Time for blood sugars to rocket to the sky, hooray. I can't live a normal life despite what the lying doctors may preach. I want to drive, better re-apply for my license every three years. I want to have a sip of juice that isn't diet? More injections. I want to go to the gym, work hard and dedicate my mind and body to become fitter, vascular and build muscle bulk? No, diabetes will not allow me that. As soon as my blood sugar begins to creep above 10mmol, my body looks for insulin but finds nothing so it eats away at any fat/muscle and I just become as scrawny as ever. I want to go out in public? Not without carrying all my medication and extra things such as sweets in the event of a hypo. I CAN'T live a normal life! I would kill to gain the life I had before diabetes. Not having to worry about anything. I miss that. Instead I have to deal with it whilst it eats away at my life. I just want it to stop. I feel so depressed at times, it really brings me down. On another note, if it's true pharmaceutical companies have the cure or the means for a cure to type one diabetes but will not distribute or produce it because there will be no money/profit to be made from the disease, then that absolutely sickens me. Is a cure too much to ask for? I just want to lead a normal life. Rant over.

 

[Spiker]

Hi Owen. I've felt many of those feelings, and so have lots of people on here. So first of all, you are not alone. This is a place where people really do understand your experience. Welcome. You are amongst friends.

 

[Spiker]

It is cruel, the bland way we are told we can "live a normal life". It's well intentioned, but it can seem like a "white lie" at best, a cruel hoax at worst. Of course, none of us can live exactly as we did before we had T1D. They really should find a better way to convey this message. A better way of putting it might be, there is very little you can't do, if you really want to, though it will take more discipline and more effort. And you should be able to continue to do most of the things that are important to you, but again and it will take more discipline and more effort. In fact, you will need discipline just for normal living, but discipline will be rewarded with better health. Probably not perfect, but better.

That would be more accurate, but it's not what they tell us at diagnosis. And by the time we know better, a lot of us are having only minimal contact with our health care professionals.

This positive story they tell people at diagnosis, and which is repeated by organisation like Diabetes UK, is a deliberate psychological management technique. It assumes diabetics will give up if they are told the sober truths. I think this is misguided. I think a lot of people react like you are doing - feeling like they were lied to, or false expectations were given. :-(

 

[Charles Robin]

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.

 

[Spiker]

A few specific responses Owen:

Yes you can go to the gym and bulk up. It is trickier as a T1D and you need specific techniques. But it definitely can be done and there are people on here doing it, who can tell you how.

If the number of injections is getting you down, an insulin pump is an alternative option. This means only one skin puncture every 2-3 days.

There is no hidden cure for T1D that big pharma is deliberately withholding from the market. Anyone who claims differently is a conspiracy nut (there are a few on here). It is true that there are substantial profits and vested interests in maintaining the status quo of insulin therapy, with only incremental change rather than radical change. But that does not stop academic groups and startups from developing exciting and radical new approaches. There is a lot of promising work in the pipeline. It's an exciting time.

 

[donnellysdogs]

Owen

Have you ever had any discussions with your consultant about having a pump to help you?

I garden for a job and that is very physical, I drive. I love food, but as my gp's have always called me "lean and mean" or recently "a great, enviable physique and suntan".

My pump has given me my life back after 30years of T1. I too hated injecting etc, people asking what bloods were etc.

A pump is concealable, especially the ones with a remote control handset. You're not always faffing around hoiking out injections etc.

They are a lot of hard work initially, don't get me wrong. Just that you sound as if you really ought to perhaps talk to your consultant about one.

You do have to meet the NICE criteria to get one.

 

[Spiker]

@jdmOwen, I just watched the video posted by @Charles Robin, and it is very inspirational and uplifting. It's also totally factual. Please watch it. I'm sure it will change how you are feeling right now.

 

[Jaylee]

Hi @jdmOwen ,

I agree with the above advice.. We all seem to deal with this in our own way..
I've been T1 for 38 years & remember passing my test & the realisation of the 3 year driving licence thing..
A couple of key points to remember. Eyesight, keep the D under control & there's no reason why you can't continue to drive.. Vision involves every road user, D or not.
Hypos. Be hypo aware. Never get to the stage you need an ambulance & hospital admittance to sort this out. You will find when it comes to licence renewal the right boxes will be ticked & a maximum 3 year reissue will return in the post!!

As for "lying Doctors"? Lol I find em a lot better these days than the "Catholicism" of the mid 70's.. I almost felt like i was going to a drug rehab clinic back then...
Agreeing with Spiker, there is no "conspiracy". These doctors & consultants just do their job like the rest of us go home & forget about it...

There's tons of advice on here from people that handle diabetes on a personal level.

Good luck!

 

[Heathenlass]

Hello, @jdmOwen , and welcome ! You have arrived at a place that will certainly help you with advice and support.
Forgive me if I am wrong, but it sounds like you are a late onset Type 1 ? Diagnosed as an adult? If so, I imagine it must be doubly hard, having a life free from all of the D monster brings, then having to take so much on board and seem to fail

It's a lot to take on, and the struggle seems hopeless and endless at times, so yeah, the normal reaction is to be depressed . Actually , I would be more concerned if someone came on here and announced " Hey Guys! I'm a diabetic ! Hooray ! Great, isn't it ??" I for one would be nervously shuffling towards the exit or reaching for the tranquilliser darts

Yes, it sucks. and can seem so BIG it will take over your whole life. In a way it does, but the trick is to break it down in to bite sized chunks (!) and change your mindset to one of taking up your sword and the challenge that Big D presents. You have already been given some advice on the armoury required by all who have posted so far, and I'm sure there will be more to come. For what it's worth, here's my contribution :

Signy's Slaying Tips 101:

Learn all you can about it. Read, ask questions. Discard what obviously won't work (snake oil ) consider the rest and adapt it to work for you if needed.

Consider the weaponry needed : Get the best meter that meets your needs, the best apps, the insulins, needles and consider a pump.

To do the above, meet the dragon guarding the first cave containing the stash: The HCP's. These can present varying levels of difficulty, but use what you learn in step one as your shield and defence, you will be your own expert. (NB. Some of the HCP's will be obviously helpful, others seemingly so. If offered an "Eatwell Plate" and associated advice , smile, then reject it silently. Or adapt it)

Get the map. Test , test, test and more test, then record (See apps ) as much information as you can Find a pattern in the highs and lows if one exists, and see why this is happening, then make changes. Mysugr is a good, free app that takes the faff out it all, as is the one at gilport.com . Not free, but excellent .

Get your BG's as stable as possible initially, then introduce what you want to do in your life. Don't be afraid of change. Bear in mind perfect control isn't always possible. Sometimes you will get highs and lows for no apparent reason, it happens to us all. Shrug, and move on.

That's for starters. But you can get a grip on this. It won't go away unless they come up with that long awaited cure, but it's manageable, Believe me, I am not a pollyanna about diabetes, I've had diabetic burnout from hell which took a loooong time to crawl back from .What made the difference was the realisation that as much as I wanted it to, it wasn't going to go away, it wasn't going to change, but the way I viewed it and dealt with it could change, so if as a bolshy b*tch I battled everything else, in life ( and mostly won!) why not the D monster ?

Stay strong. You are stronger than it, even if you don't feel that way right now.

And no, I've not been playing too much Dungeons and Dragons! Walkyria!

Signy

 

[Jaylee]

Forgive me if I am wrong, but it sounds like you are a late onset Type 1 ? Diagnosed as an adult?

Your forgiven Signy. The OP was diagnosed around the age of 13...

 

[Heathenlass]

Your forgiven Signy. The OP was diagnosed around the age of 13...

Gah! Sorry ! I missed that

Same tips apply though, maybe slightly different armour though, the younger you are the more practice you need in fighting your corner. And more importantly, winning it.

Be grateful if you're male, the metal bra is a b*tch !

Signy

 

[noblehead]

Can't really add much more to what's already been said.

It's fair to say that some people cope with diabetes better than others, however anyone struggling emotionally and psychologically should speak with their diabetes care team and ask for help, no one should feel that they need to suffer alone as there is help out there but you do need to let them know there's a problem in the first place.

As for your sporting activities Owen, take a look at the following two sites, both are aimed at type 1 diabetics who love partaking in sport:

http://www.runsweet.com/

http://www.teambloodglucose.com/TeamBG/Home.html

 

[jdmOwen]

Okay thanks to everyone for your input, it's a lot of stuff to process haha. I guess what I've been feeling is a result of high blood sugars but it's tough because having high blood sugars just makes me more ignorant towards my diabetes like I can't be bothered with it anymore and it's a vicious circle I need to get out of and back into the swing of things. As for the whole bulking up, I'm going to look for other threads that might have tips on how I can put on muscle etc. I'm glad to have found this forum, there's nobody else I know who's actually diabetic and it gets stressful because you have nobody to speak to about it, albeit you have a parent or doctor, they just patronise me. Unless they actually have diabetes they will never understand how I feel unlike fellow diabetics on this forum.

 

[Robinredbreast]

Gah! Sorry ! I missed that

Same tips apply though, maybe slightly different armour though, the younger you are the more practice you need in fighting your corner. And more importantly, winning it.

Be grateful if you're male, the metal bra is a b*tch !

Signy

............especially with a broken wrist

 

[Robinredbreast]

Hi Owen, yes type 1 sucks at times, I think we have all been through it. I look at it as sometimes it can be a rollercoaster ride, and the one I like best is the carousel, going round at a steady speed with a few up's and downs along the way. Diabetes can hit people very hard, but please don't let it rule your life, you will suffer emotionally and physically if you do. I have had some nasty moments and had a recent one, but always managed to fight my way back. A plus side, I had my daughter at 42 1/2 years old and for that I am truly grateful. We can do anything we set our minds to do, and always try to believe in your self. that's half the battle.
You are not alone as you are amongst many others with type 1 and you could make some good friends here/

'What lies behind us and what lies before us, is nothing compared to what lies within us' . please take good care, with best wishes RRB

 

[noblehead]

Okay thanks to everyone for your input, it's a lot of stuff to process haha. I guess what I've been feeling is a result of high blood sugars but it's tough because having high blood sugars just makes me more ignorant towards my diabetes like I can't be bothered with it anymore and it's a vicious circle I need to get out of and back into the swing of things. As for the whole bulking up, I'm going to look for other threads that might have tips on how I can put on muscle etc. I'm glad to have found this forum, there's nobody else I know who's actually diabetic and it gets stressful because you have nobody to speak to about it, albeit you have a parent or doctor, they just patronise me. Unless they actually have diabetes they will never understand how I feel unlike fellow diabetics on this forum.

Owen, if you've not already been on the course ask about going on a carb counting course such as DAFNE, they cover all the important aspects of type 1 diabetes management such as getting your basal insulin correct, bolusing for food (insulin-to-carb ratio's) as well as covering things that effect bg control like exercise and illness, once you've done the course it will help you control your diabetes better, once that is in order you can then decide to make dietary changes should you choose.

If you register on the following website it will teach you the basics of carb counting, good luck......

http://www.bdec-e-learning.com/

 

[jdmOwen]

Carb counting is no problem, learned that when I was first diagnosed and my current ratio is 1:10 insulin/carbohydrates and 1:3 insulin/bg, I can control my diabetes I just don't have the willpower

 

[noblehead]

Carb counting is no problem, learned that when I was first diagnosed and my current ratio is 1:10 insulin/carbohydrates and 1:3 insulin/bg, I can control my diabetes I just don't have the willpower

Thanks Owen, I do think it's best that you try and get some support from your diabetes team for your problems in accepting and coming to terms with your diabetes, your by no means on your own here as we have all been through this at some point in our diabetes journey, I never really accepted my diabetes at first and wouldn't even talk about it, I just wish back then there was support around like there is now.

BTW, If your not under the care of a hospital diabetes clinic then I would suggest you ask your gp to refer you over, they are more adapt at dealing with problems relating to type 1 diabetes.

 

[Spiker]

Carb counting is no problem, learned that when I was first diagnosed and my current ratio is 1:10 insulin/carbohydrates and 1:3 insulin/bg, I can control my diabetes I just don't have the willpower

Psychological burnout and depression are acknowledged to be much more common in diabetics. Needing willpower and self management every single day takes its toll. :-(

Your hospital diabetes team should have an assigned counsellor who is there to help in this situation. If not, contact Kings College Hospital who are the centre of excellence for this.

And keep talking on here. Lots of us have been in the situation you are in. I have been. More than once.

 

[jdmOwen]

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