I'm really struggling...

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7
Type of diabetes
Type 1
Treatment type
Insulin
Hey! I'm 18 and have been diagnosed for five years now. My control has always been up and down, and I guess if I were to be totally honest I have never been fully in control of my diabetes. Things however, got a lot worse when I started university in September. I stopped taking all my insulin and stopped doing my bloods. I have 7 other medical conditions, three f them don't affect me that much but my diabetes, fibromyalgia, being partially deaf and having insufficient vitamin D really do. I don't really look after myself. In January I was admitted to hospital with DKA. And after I came out this kicked me into trying to sort it all out. Now though I'm slipping again. I've lost motivation and I really don't know what to do. I am scared about getting ill again. It's just that I guess, again if I'm being totally honest, I don't know how to accept the fact that I am diabetic, and that for the rest of my life I will be diabetic... Anyone else struggle like this? Has anyone been here and gotten out of it? And if so how? I want to be in control of my diabetes, I just don't know how to...


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jack412

Expert
Messages
5,618
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Well you have come to the right place to learn and there are also courses. It may not seem like it to you now, but you are coming to terms with being a diabetic, simply by joining the forum you have shown this.
I'm T2 so can't be much help, bet in the morning there will be lots who can. from reading they say to fix the long acting insulin dose first
 
Messages
7
Type of diabetes
Type 1
Treatment type
Insulin
See I know how to physically control my diabetes, it's just getting in control of it physiologically - if that makes sense?
I guess you're right, maybe this is the first step I needed to take
Thank you for replying :)


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jack412

Expert
Messages
5,618
Type of diabetes
Type 2
Treatment type
Tablets (oral)
You have done the hard part, it was brave of you to join and knowing physically is going to make it a lot easier. The mind is a funny thing and it could be something very simple that is blocking you. You may be stuck in one of the 5 stages of grief or just need a good cry from the bottom of your heart, or you may be so angry about it and no way to express this anger that it is internalised
http://www.diabetesexplained.com/the-five-stages-of-grief.html
 
Messages
7
Type of diabetes
Type 1
Treatment type
Insulin
That may be a big part of it really. Especially seeing as my diabetes was the first thing I was diagnosed with, and then the other 7 followed. I just don't really know how to accept any of them


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jack412

Expert
Messages
5,618
Type of diabetes
Type 2
Treatment type
Tablets (oral)
so you could have all your stuff all piled up on your diabetes and that's your whipping boy.. are you looking after your other medical stuff?
 
Messages
7
Type of diabetes
Type 1
Treatment type
Insulin
No not really, I've only just been diagnosed with asthma so that's just an inhaler when I need it - which I use when I need to. Some of the stuff I have there is nothing I can do I just have to deal with it. But the meds I do have I don't really take


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jack412

Expert
Messages
5,618
Type of diabetes
Type 2
Treatment type
Tablets (oral)
could it be as simple as, only sick people take meds and if I don't take meds I'm not sick?
well you have come a long way a few hours ago when you joined and something will gel over time, I found that 5 stages of grief link helped me
try making up and finishing sentences to see if anything makes sense to you.. I don't want to take my meds because it.... I hate diabetes because....


PS the kids in the pic are a couple of gems
 
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Spiker

Well-Known Member
Messages
4,685
Type of diabetes
Type 1
Treatment type
Pump
I think Jack could be right. Not taking insulin is a way of denying that you are ill - as in "denial". :-(

I've done this on occasion but never for a long time. That really is dangerous - as you found out. You might be a good candidate for a pump as in some ways (though not in others) a pump can feel more free and flexible to some people. Young people are priority candidates for pumps.

When you moved to University did you lose contact with the health care professionals who had supported you after diagnosis? It's really important to have good support and feel connected to someone who you trust is able to help you. Make the most of whatever medical service you have, such as the University health service. Tell them your difficulties. Increasingly it is realised there are psychological issues in diabetes and people need motivational help or counselling support. See if your medical service can give you this, or your hospital diabetes centre can.

It's really good that you are talking about this. Lots of us here have been through similar things. We can help. :)

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Daibell

Master
Messages
12,653
Type of diabetes
LADA
Treatment type
Insulin
Hi. It must be difficult when you have T1 at such a young age, but you know you have no choice and if you don't take control the long-term effects can't be undone. Apart from the difficulty we all have about having diabetes are there any specific things about your insulin regime that irritate you the most? What regime are you on, do you carb count, do you use a modern pen, how many times day and so on? GP/DN advice varies and sometimes a few things can be tweaked to make life easier. When you feel down just remember how many others with db there are out there; you are not alone.
 

Charles Robin

Well-Known Member
Messages
570
Type of diabetes
Type 1
Treatment type
Insulin
There are a few things you should consider with your diabetes. It can be as good or bad as you make it. Thinking about the negative parts of it is the natural thing to do, but there is plenty of good that can come of it as well. First up, free prescriptions. Sounds small, but this covers everything, not just diabetic stuff.

Next point, as diabetics we get a lot of medical tests done regularly, far more so than non diabetics. This means that any unrelated medical conditions will get picked up on much earlier, and for some that could be life saving.

The next thing to ask yourself is what it is that you are most afraid of. Is it the injections and blood tests, or is it admitting you have a condition you feel you can't control? If regular injections are a problem for you, it may be worth looking into insulin pumps instead. I met a diabetic of 40 years that had never gotten over his fear of needles. He was tormented daily by having to inject, and having an insulin pump fitted made a huge difference to him, because there was a lot less injecting.

The next point is the one that takes time: coming to terms with your diabetes. I was diagnosed age 3, so this has never been an issue for me. It's something I do, and in a wierd way I would miss it if it wasn't there. This is obviously very different for you. First of all, I went through university, and all the social aspects that came with it. I did not miss out at all due to my diabetes. That said, you need to control it and be sensible (easier said than done I know). The most important thing, and I can't stress this enough, is that you CAN get on top of this. I was a terrible diabetic as a teenager. I have only really started getting a handle on my own diabetes in the past couple of years, and I have been amazed how well I have done compared to before.

The way I did this was to change my outlook. I used to hide from my diabetes, and tell everyone on the outside that everything was fine, and it was not a big deal. The effect this had on both me and those I loved was not good. On the inside I was a wreck. I would lay awake at night wondering if I was damaging myself, and if I would be alive by the age of 40. What's more, my facade was not working. When my girlfriend asked about my diabetes, I would get irritated. I didn't want to tell her the truth, so I hid the facts. I told her it was all fine, everything was fine, stop asking, I'm fine. However, she had to deal with my hypos, and worried constantly. It was not until we got married that I really started looking at the future, and I realised things had to change.

Anyone that tells you that you can't control your diabetes is a liar, and that includes yourself. You will have days of poor control, there are no 100% perfect diabetics. Don't let that dishearten you. The first thing you need to do (I know this is hard but I promise you it will improve your life dramatically) is to acknowledge your condition. Speak to those close to you, I guarantee they will want to help. See this as a challenge, something to be conquered. I can't begin to tell you how pleased I get when I show my wife the 5.2 my blood test meter has just recorded, I am like a 5 year old with a drawing he has just done. It sounds stupid, but get that pride into your mindset. Every good blood sugar result is a win.

But how do you get good results? If it was as easy as just testing and injecting, life would be simpler. The truth is that it takes work and dedication, but it is so, so worth it. The more you understand diabetes, the better you can manage it. There is an array of literature out there, and various ways of eating that can help with good control. I have found that a low carbohydrate diet works very well, but this is a controversial topic, and has seen many a dispute on this forum and across the world. If you are interested in learning more, this video really opened my eyes.
. There is also Dr Bernstein's complete diabetes solution, which is a guide to normalising blood sugars by following a low carbohydrate diet. Whatever you decide, I would suggest reading the most up to date diabetes literature you can find, so you can better understand how to manage well.

The best way to get good control is to live by your test results. If you eat a meal and it sends your blood sugars high, think about why this was. It may be the portion was too large. You may need more insulin to cover it. It's possible that eating a smaller amount will make for an unsatisfying meal that you can't stick to. If that's the case, look for alternatives. An example: Potatoes are great at giving me high blood sugars no matter what quantities I eat them in. I found out about a vegetable called celeriac, which has a fraction of the carbs, and can be used in just about anything that would use potato. It takes longer to prepare, but I actually prefer the taste now. Every time you switch out a food for something else, that is a victory for you. It is something you can be proud of.

There will be times when you wonder if all this work can be worth it. Letting things slide is easy, in the short term. However, making a concerted effort has so many benefits. High blood sugars make you irritable and lethargic. Bring them down to healthy levels, and you will be amazed by your energy levels after a while One very important point though: if your blood sugars have been running high for a long time, you get used to the feeling to some extent. In the short term, normal blood sugars can then make you feel hypo and drained. This is quite a short term effect, but unfortunately it does require some willpower to get through. I found I felt a bit wierd for about three weeks with normal blood sugars. Testing your blood is massively important here, because sometimes you will feel hypo because you are. Keep a supply of glucose on you at all times (dextrose tablets work best for me).

It's a pain, but try and keep a diary of your results, food and insulin. That way you can measure your success, and work out where you can make changes if things are not working so well.

Always remember that this forum is here for you. You are more than welcome to share your experiences. Tried hard but had a bad day? Come on here and have a rant. Had a great day of exemplary control? Make a post and brag, shout it from the rooftops. Made a decision to avoid a type of food? Let everyone know, and post regular updates about how well you are doing sticking to your resolve. You can do it, you really can. Oh and one more point, discuss as much as you can with your healthcare team. They are paid for by the nation's taxes, so they have a duty to be as helpful as possible. Ask for their advice, and discuss ways to make controlling your diabetes easier.

Best of luck, once again, you can do it!
 
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Spiker

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4,685
Type of diabetes
Type 1
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Pump
I guess, again if I'm being totally honest, I don't know how to accept the fact that I am diabetic, and that for the rest of my life I will be diabetic... Anyone else struggle like this? Has anyone been here and gotten out of it? And if so how? I want to be in control of my diabetes, I just don't know how to...

For what it's worth, this is how I dealt with it. I thought at least I don't have cancer or MS or CF. My friends and family did think I had cancer, I was so ill. So I thought, I've got a disease but it's not going to kill me, it's not going to leave me in some horrible disabled state. It's a disease that I can totally control myself, and I have the power to stop it being degenerative. I have the opportunity to have the same lifespan and the same quality of life as everyone else, I just need to work at it a little.

Something else that has helped as I got older was to cut myself some slack and not worry if I don't do every single thing as well as non diabetic people. Newly diagnosed people often want to say "this won't stop me doing what I want". That's a great attitude and it shouldn't stop you doing anything you really want. But it does help to accept that you can't do every single thing you want, as intensively as your friends, because you do have to give priority to managing your condition. So I cut myself some slack now and don't beat myself up for focusing on my own health some times rather than work, etc. But it can be very hard to feel different, feel like you can't keep pace 100% with others. I want to stress, for the things that matter to you, you absolutely can keep pace 100%. Just not with every single thing in your life. You need to make some time that's just for you, just for your health, and feel good about making that investment in your own health. That investment pays off by allowing you to do all the other things you want to do with your life, with your friends, etc.
 
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donnellysdogs

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I too got diagnosed with fibro, and thats hard to cope with too. However you will find that the more you do to keep physically fit.. And I know its painful the better your mind will feel and I also take a lot of vit d tablets that as well as pushing myself physically has seen such improvements in the other factor which goes in hand with all of being diagnnosed with any life time illness and that is a likely to have depressive thoughts about coping, life in general.

Coming here is a good step to take, there's huge help and encouragement and support. However, I think you need to be able to talk things and perhaps thinking more positively about how you can cope.

Fibro is hard, but honest I used to have full disability and found it hard to get out of bed each day.. Now, no disability and so active despite pain but doing things helps to forget the pain and the depressive thoughts.

You say you are at uni, so you've done well to achieve that. Do you find that this fills your time completely, or do you have free time on your hands that you could spend doing other things?


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kkkk

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Messages
185
Type of diabetes
Type 1
Treatment type
Insulin
Do you know anyone else with diabetes that you can talk to, other than us lot here, a face to face person? When I was young I went on a diabetes UK type holiday thing, and it was just easier as everything was counted for you and there was loads of support and time to talk - it might be worth talking to them too. Speak to your diabetes care team whether that's still at home or Uni, and do do do do do look after yourself as looking after yourself will help you feel better too and you can do it, it may not be easy but there are loads of us here that will happily encourage you along the way and offer your advice from our experiences, just we can't give you a hug or a smile so easily :)
 
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Messages
7
Type of diabetes
Type 1
Treatment type
Insulin
All of these comments are absolutely amazing! Thank you all so much for replying. You have all really encouraged me.
I don't know anyone else with diabetes, so actually having others say that it's been hard has really helped, as for the first time I don't actually feel alone in all of this.
All the advise given is also pretty amazing. I am going to really try and get on top of my diabetes. I'm have an appointment with my nurse after Easter so I will chat to her about how much I'm struggling. I'm also going to chat to my dietician and ask for some help from her too.
I think after reading what you have all said I've realised that I don't have to be a perfect diabetic, but I do need to at least try and look after myself.
Thank you all so much!!!


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kkkk

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Messages
185
Type of diabetes
Type 1
Treatment type
Insulin
All of these comments are absolutely amazing! Thank you all so much for replying. You have all really encouraged me.
I don't know anyone else with diabetes, so actually having others say that it's been hard has really helped, as for the first time I don't actually feel alone in all of this.
All the advise given is also pretty amazing. I am going to really try and get on top of my diabetes. I'm have an appointment with my nurse after Easter so I will chat to her about how much I'm struggling. I'm also going to chat to my dietician and ask for some help from her too.
I think after reading what you have all said I've realised that I don't have to be a perfect diabetic, but I do need to at least try and look after myself.
Thank you all so much!!!


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Don't think any of us are perfect...just do your best :) Really glad to hear this, do pop back and let us know how you are getting on :)
 

donnellysdogs

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People that can't say sorry.
Leanne

In this world, you have to love and care for yourself.. Learning is part of that.. Diabetes is a constantly changing illness in each indivisual body. We all have good and bad times. Most imporant lesson to learn though is learning to love your body no matter what happens..




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mark51

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Messages
62
Type of diabetes
Treatment type
Non-insulin injectable medication (incretin mimetics)
Dislikes
Negative people, Rain
Hi Leanne_natalie, I was only diagnosed at the end of Feb this year. I had been feeling bad for probably 6 months or more, I just put it down to work. I work away from home for 5 days a week and travel on a Sunday. So I just put it down to the pressures of work. I had a routine blood test at my doctors on a Monday morning by 2am Tuesday morning I was in hospital 300 miles from home. I had a bg of 39.1. Once I had the diagnosis delivered to me I actually felt relief that it was diabetes and not something else. I have changed my diet, exercise a bit more, well actually I now find time to exercise as opposed to sitting watching TV. I now feel so much better, I've lost 11kgs already. I'm on 1 500mg metformin slow release twice a day. I've managed to get my bg to around 6mmol. I've so much more to do and wish to be around to do it. The one thing I think is important is to have treats and plan things to do, and don't be too hard on yourself if you fancy something.
Hope you feel better, and start to take control. It's worth it!

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Charles Robin

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Messages
570
Type of diabetes
Type 1
Treatment type
Insulin
Taking control can be such a positive step. I'm amazed how much my life has improved these last few months. If you had asked me to make you an omelette 3 months ago, I would not have been able to do it without looking up how. Cooking for me involved putting a frozen meal in the oven. Then I decided to change my diet and take control. Knowing what is in the food I eat means I have to prepare most of it myself. This has led to a considerable amount of learning. At the beginning of the year my wife handled all the cooking, as well as doing a full time job. I was newly self employed, and did not have much business. I had no energy, so was not putting in my share of the rent, the housework, anything really. It wasn't fair. I shut my wife out of my health because I was too scared to admit I had no control. All that has changed. I started getting things under control, and it gave my energy levels a boost. I started putting effort into advertising my business, and things have picked up massively. I now pay my share of the bills, and keep the flat tidy. I also handle the lions share of the cooking. I used to be too lethargic to be up before 11am, usually midday. Now I am up at 7 each morning cooking breakfast for my wife and I. I have learned to make omelettes, frittatas, low carb curries, low carb cakes, cheesecakes, roasted low carb chips, low carb pizzas, the list goes on. I also discuss all my bloodsugars results with my wife. If I go high we work out together what caused it, and what I will do differently next time. If I have a hypo we discuss how many dextrose tablets I should have to correct it. We look at how much insulin I am giving myself, and see if tweaks need to be made. She is so much happier because she knows she does not have to worry as much any more.
All this has been possible because I decided to be in charge of diabetes and not the other way around. I am not perfect and I still have a way to go. I shared a bottle of wine last night for example, and it has made me hypo a couple of times today. Next time I will reduce my insulin dosage and monitor how things go.
Long story short, you can have an exciting journey controlling your diabetes, and there are so many positives to the path you have chosen to take.
 
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