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Type 1 In SERIOUS Trouble

O

OfficerBiggles

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2
Greetings!
I apologise now for my long post but I need some advice, and hope someone is around to aid me in anyway!

I was diagnosed in 2009 days before my 15th birthday, and had a terrible experience to which my diabetic nurse made worse. I suffered a massive leg injury a few years previously as a child to which th canula that was inserted missed 8 times in my hand causing a needle phobia. This didnt help when my nurse forced me to inject despie my fear, causing the fear to become irrational.
Everytime I go to bloods, or canula's get into such stress I hypo! Every time! As you can tell this has caused many problems with my injections, and blood sugar levels. I have been admitted to hospital 10+ times since then with high blood sugars and kidney failure, but this still has not prompted me to take my insulin on time, or at all!
At times I go for weeks without it and make myself tred, sick and I get multiple ear and urine infections. I'm always grumpy yet there still has been no turning point. I then, in a panic take loads of insulin when I realise what Im doing to then cause a massive hypo, make myself feel even worse and go back to not taking any insulin again.
At the last count my sugars were "Hi" and my HbA1c? I think, was 14+. I've become so I'll I went from 16 stone (caused by the undiagnosed diabetes) to size 6 in a year and a half! Im wasting away and Dont know what to do!
I do now however have a new nurse who listens and helps, and I now have these new needles from America, which cover the needle, and do not shoot into me like my penmate did, which caused bleeing adding to my fear. :(
I started carb counting but, im now stuck in a rut of not doing my insulin and I don't know where to begin to start doing it again? I've tred diaries but I'mnot that organised, and dont keep up with them.

Any new idea's? I'm totally at a loss and I only see my nurse every 6 months for an hour, Idont have enough time to sort things out. I don't want to go back to hospital but I'm in constant pain with my kidneys, headaches, numbess in my hands, poor sight, slepless nights, and sore joints! And Im only 18!!

Thanks everyone,
 
Hi,
Welcome, you have just made the first step to sorting your life out, you came on here and told us your story. Well done.
You really must start taking responsibility for your health else things will only get worse and you will lose the chance to do all the stuff someone of your age should be doing.
Please take your insulin as you should, if you do you will start to feel better and then you will learn that needles aren't to be feared and can be good.
Keep in touch with us.
Angie
 
If you want to live inject insulin, simple as that really.

Sorry if that sounds harsh, unfortunately that is the reality.

I find injecting at an angle on my belly fat is almost pain free and no blood comes out.
 
I started carb counting but, im now stuck in a rut of not doing my insulin and I don't know where to begin to start doing it again? I've tred diaries but I'mnot that organised, and dont keep up with them.
Click to expand...

You need to get back on track as the others say.
You have your needle coverer and you know the basics of carb counting.
Here's one good reason for injecting written by a young woman with similar problems
"I will be able to achieve my dreams, go travelling, have children ,a career. These things are **** right impossible when sick with diabetes"
Try some self help tactics. This one t has been helpful to people in a similar scenario to you before before. Divide a piece of paper into 2 and head it pros and cons of injecting .On one side write the pros ie what you will gain from injecting / the other the cons Keep the list as a reminder .
If you can't do it all in one go: make small targets.
'One step at a time. That is how I will get where I am going'

For example target that you will inject my basal insulin. Stick a chart on the fridge and tick it off when you do it.
Move on from there to the another target of injecting before a meal. You haven't been taking any insulin so each step will be an improvement.
Try to contact your nurse even though it's between appointments and ask for help. She may now be able to offer more support now you have decided to make a change.

Keep in touch, there are other people on here that have missed injections at some time in their lives

One thing that has struck me is that you may still live at home are you able to get support from a parent or brother/sister?
 
H
There are other options to using bolus/basal insulin and you could use twice daily insulin injections instead and still use an insulin pen. You will still need to add up the carb that you are going to eat and remember to eat some food within set times but on the whole you might feel a lot better about using insulin as it involves less injections. Also, although not medically approved, diabetics can also inject through their clothing without too much bother. Many like it as they feel that it draws less attention from onlookers and because the needle is going through clothing, the injection doesn't hurt at all. I used a 5mm pen needle with no bother and often when out, I injected through a t-shirt sleeve or through my t-shirt into my tummy. I just remembered to remove the needle after the injection and use another one for the next jab. Another option is to look at using a jet injector viewtopic.php?f=19&t=24642

You are very young to be affected in the way you are so please start looking after yourself otherwise you will end up in intensive care - fighting for your life and I dont think that life is so awful that you would want that to happen. Many many people have diabetes so dont think that you are the only one... The reason why you cant see it in other people is because other people cannot see it in you....
 
This is going to sound really harsh, but if you don't take your insulin you will die soon. Irrational fear of injection, or death - which to choose? Think of the pain you will cause your parents, family and friends if you die, because you will if you carry on. Your parents will never get over it. Do it for them, if not yourself.
 
Have you tried Cognitive Behavioural Therapy or something similar to help retrain your brain out of this irrational fear - your nurses should be able to sort you out with funding... at the end of the day you will be costing the NHS far more if this continues
 
Phobia - the general advice is exposure therapy.

It is often done with the help of a therapist/counsellor/psychologist, but the idea is you expose yourself to the smallest/least bad trigger for anxiety first - it could be 'look at the needle', don't touch, don't inject, just look.

Before you do this, you get yourself in a relaxed state of no anxiety - this can be done via relaxation techniques or imagining the best holiday you ever had or a perfect spot somewhere safe from harm.

Then you look. Rate your fear from 0-10. Go back to your safe place. Feel it. Be safe. Look again. Now stay with it and keep looking until your fear starts to decline - when it declines, you may stop. Not before or it won't work. Do this a couple times over a couple days.

Take the next trigger - how does it feel to hold the needle in your hand...

This is as I said best done with the assistance of a person with an education to do this but the technique should work.

Until such a time when you can do it yourself, what are the options around you to have someone give you at least your basal? I know that here, old people and others who have trouble doing their own injections can have a nurse pop by at 8 ish and give them the injection.

Another option is to try and control your fear by saying out loud to yourself 'I am going to take my insulin. I'm not so comfortable with it, but I need it. I am taking xx units. I have checked that that matches what I need. I think it might hurt but I'm quite sure it's just my mind playing tricks. I'll do it now and then jot down how bad it was. Maybe in a few days, I can see some improvement.'

It's all about forcing your mind to think the right thoughts and put a bit of an end to IT telling you what to do. Try telling it that it's okay and it's okay to be afraid, but this needs doing. I betcha in a few days, the 'discomfort' or fear will feel less. Can always try, eh?
 
as well as the ideas above, I'd recommend trying to get an 'abbot insulinx' blood meter, as it calculates the amount of insulin required, I know it dont address your needle phobia, but with help to address that as mentioned earlier, thats one thing thats taken care of, they are available free at the moment,on here, look at the ads on the right of the page.

Bob
 
how about having insulin only twice a day and sticking to meals with a set amount ish of carbs in each as instructed by your nurse.

you have needle phobia and yoy could try hypnotherapy if someone would like to give you an early xmas pressie or go to your gp and get referred for phobia treatment

what ever it takes.........carb counting is easy my daughter can do it fine although often ignore the info!!!!!.

good luck and get back to us with some progress. my daughter is not needle phobic just HATES having diabetes. i woory that she may end up like you!!!!!
 
Tanks Peeps!
I am currently having behaviour theropy to address my needle phobia which is coming on well, my main problem is where to start!? I want to do it, and I know I can do it now, I just have a problem with failing again.....

Any ideas?
 
The fact that you have made a start is really positive, and you seem to have plans to work through other issues, thats the biggest hurdle sumounted.....just keep breaking it down into bitesize chunks, and u'll get there,

Bob
 
Start with the basal. Take it once a day at x o'clock. Make your phone alarm kick off. Match it with the toothbrush. When you do the curtains. Anything you always do. Put a note on your pillow -insulin?? Keep a list as someone suggested, tick off when done. Can make a spreadsheet, print a tiny calendar from the web or whatever works for you.

When that is no problem, work on one meal at a time. You're likely to need slightly more insulin in the morning than the evening due to insulin sensivity changing over the day, so perhaps the evening meal is the best place to start - it's probably at home, and the dose will be smaller which I guess means more managable? You'll not get into any trouble as you're able to check and correct.

Once it gets into a rhythm and you have linked it in your mind with food - see a plate, instantly think insulin :) - then probably forgetting will be rare. I have forgotten a couple doses lately and caught them half an hour later. I think when it's seldomly, it just means that it's nolonger taking up all my free brain space :)

Good luck - but make links, give yourself more than one hint.
 
I hate needles too, although I am generally ok if I am in control. If anybody else comes near me with a needle, however, I tend to panic.

A few years ago my GP spoke to me about some device that fires insulin through the skin using high pressure. I can't for the life of me remember what it was called. On a nutshell, you held the device over your arm, for example, and pressed a button to dispense the insulin. It then fired the insulin at high pressure through the skin. Completely needle free, although it can leave bruises. Anybody else heard about this? Anyway, might be worth investigating.

As for not doing your insulin, you don't need any of us to tell you what sort of trouble you're going to end up in if you don't sort this out. It sounds like your diabetes is already having a huge impact on your life. It's only going to get worse if you don't do something about it. I'm not saying it's going to be easy, but it has to be done if you want to live a normal life and do all the thIngs you want to do.

Emma
 
It sounds as if you know that your health will/is suffering with a lack of insulin, so I am not going to unnecessarily sound like a broken record going on about that.

You seem to be keen for a change which, like mentioned before, is a massive first step. You sound like you are willing and happy to hear tips about trying to get into some kind of routine in order to help keep on top of your injections, and to know how much to inject, and to try and deal with your needle phobia. It's understandable to gain a phobia given that you went through a traumatic time during the diagnosis of a chronic illness with, what seems like, a lack of support and help at a sensitive time. Plus, at that age there is so much going on in your life! I am actually doing a study on this for my psychology masters at the moment (link here is anyone is interested in taking part in the online survey: http://sdu-surveys.herts.ac.uk/transitionalcarestudy1 no pressure though of course), so much goes on at that time of life and this diagnosis requires such a massive amount of control and balancing of everything in your life, no easy task! Personally, I am trying to determine what support the health services should offer and make appropriate recommendations.

I think it's probably easier, at least at the beginning, to stick to meals at regular times and similar carbs for meals so as to not add more things to think about. Also with remembering to take the insulin, perhaps regular alarms on your phone reminding you would be helpful?

I've heard about the device that pushes insulin through your skin at a high pressure - good for needle phobias, but it's still painful apparently, and leave bruises. But if it would help you take your insulin then you might as well make enquiries with your health professionals.

I think it's commendable that you are going for behavioural therapy too to try and deal with your phobia, it takes a lot of courage. It's a tough time but with determination you will, in your own time, get through it, it may not seem like it a lot of the time but you seem like you want to make a change, and I think that will help you get through this.

All the best,

Claire
 
I can empathise with your predicament. I had an insulin phobia and dropped half my body weight, had to spend a month on an anorexia ward for re-feeding. It is a horrid struggle and hard to communicate just how difficult things can be to others, and yes, you know you might die or end up very sick, but fear is a funny thing. The whole issue of a phobia is that it is irrational. Things got better for me when I was given a pump. Only having to change a cannula every 3 days gave me enough of a break from the anxiety to make a difference. And asking to see a DSN more and a referral to a CBT therapist helped. It's a long battle, but every injection is progress.

Saying you don't have enough time is an excuse I made. The sad truth is you don't have enough time to live and enjoy your life if you don't get help now. The best thing that happened to me was when I realised I have more to live for than hospitals. I recommend a support group, speak to other diabetics, and use your phone to set alarm reminders. Reward yourself for taking your insulin and set goals that matter to you. You can do this, I know because I was that person crying in the corner of the nurse's office refusing the injections and wasting away. If you can't do it for you, do it for the people you love.
 
Jesus dude sound like your having a **** time. Been some good comments. Whats crazy is you say how bad its got and how many times youve been in hospital and yet your only seen once every six months its madness. My personal opinion. as some people state you need insulin, but your worried where to start. I would think about starting on just 2 injections a day. Ive been type one since 10 years old iam 32 now and still on 2 a day. if youve got a needle fobia might be an idea. the 4 injections a day carb counting might seem alot to take in if your already having problems. As it stands i have an jab in the morning about 8am and one in the evening around 6pm. i eat breakfast small dinner have a good t and mite if sugars are normal have a very small snack before bed. Its not very flexible the idea is to sort of eat regular small amounts. But by the sounds of it your main worry is jabing not eating. Your bound to feel ****. with no insulin you body sorts of eats away at itself, because your sorta starving your body. And the problem you might have you may have good intentions, but like before a bad hypo low sugar can put you off and set you back again. Iam no doctor but i would seriously consider twice a day jabs. I grab abit of skin from the tops of my legs or do it in my bum cheeks lol. check your sugars regular, and once you get more comfortable just nodge your insuling up by one or 2 units and see what it does. Iam on Humilin M3 soon as you start having insulin and geting your sugars under control you should start putting on abit of weight and feel alot better. Keep chin up hope you get things sorted abit soon.
 
hi i went on a carb counting corse and someone
there was like you and they said they was a needleless pen you can get!sorry cant remmber what it called
all the best

Peter
 
Hi i was diagnosed just last year and so can still relate to your needle phobia, mine has now gone though and i accept it was not as bad as yours so my apoligies that you are in such a situation, the worst thing i was doing was to hesitate, i would put the needle near to the skin go back and back again it just made the whole concept more frightful than it had to be, perhaps do it in the tricep (back of your arm) as you cant see it and so might not be so bad, also if your a bit skinny it will be best to put it in the heavier part of your body to avoid hitting nerves and making it painful and bleeding to occur too so as someone said beside the belly button is basically painless as the fat accumulates to protect organs around the torso, I hope you get better and you can live a normal life just be brave for the first few injections and it will be like ABC in a few weeks!
 
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