Long term diabetic - feeling like he needs to relearn everything!

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ChrisR

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Type 1
Hi

I'm newish to these forums, have popped my nose in a few times, but this is my first post.

I've had type 1 diabetes for 24 years or so since I was 14. However, Ive got to the point where it feels like I know absolutely nothing anymore, nor how to get back on track with things. I do all of my injections, am *reasonably* in range, but.....well, my energy and libido seem to be nowhere. Ive got lots of mental energy and am always thinking about being up and about all the time, and do go cycling, walking swimming, but overall I feel unenthused and lethargic (if thats not contradictory). I guess im getting mentally drained from being unable to really get on top of it for so long and hiding the problems, kidding myself Ive been generally fine.

Anyway, hello!!
 
Hi Chris, welcome to the forum 🙂 What sort of insulin regime are you on, and how is your control generally? Have you done a carb counting course, such as DAFNE? We have a number of people who have been long-term diagnosed who found themselves in the same position as you, and I've read some great experiences of how just sharing experiences here has helped them to get to grips with things, so I am sure we can help 🙂

Do you record your meter readings, insulin doses and food? This can be a simple way to start looking for patterns or ways that you might improve things here and there - small steps and changes can make a big difference and a better understanding leaves you feeling more in control of your diabetes rather than having some vague idea that you are doing resonably OK or maybe could do better.

I'd suggest getting hold of a copy of Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas and skimming through it. Don't be put off by the title, it really is an excellent refereence work about Type 1 and may give you lots of ideas or questions that you may never even have thought of!

Also, it's good to just chat with others who 'get it'. We have 'real life' meet ups as well as chatting here - not just about diabetes, but knowing you don't need to explain things often helps you feel more relaxed.

Let us know if there is anything specifically you'd like to know, or just pitch in to share your experiences - I'm sure you have many valuable tales to tell of 24 years! 🙂
 
ChrisR said:
Hi

I'm newish to these forums, have popped my nose in a few times, but this is my first post.

I've had type 1 diabetes for 24 years or so since I was 14. However, Ive got to the point where it feels like I know absolutely nothing anymore, nor how to get back on track with things. I do all of my injections, am *reasonably* in range, but.....well, my energy and libido seem to be nowhere. Ive got lots of mental energy and am always thinking about being up and about all the time, and do go cycling, walking swimming, but overall I feel unenthused and lethargic (if thats not contradictory). I guess im getting mentally drained from being unable to really get on top of it for so long and hiding the problems, kidding myself Ive been generally fine.

Anyway, hello!!
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Hi Chris a warm welcome to you. It must of being very difficult being diagnosed with Diabetes when you are a teenager. Do you know what the actuall problems are? and have you thought of talking to your doctor, it could be a form of depression that you are going through. I think bad times hit all of us at some point. You do sound fit and active, so you seem to be looking after your self. I do hope things start to get better for you soon. With warm wishes Sheena
 
Hi Chris and welcome to the forums. I'm Type 2 for nearly 8 years and only really started to feel confident in handling my condition since joining here. Was doing okay before, but now i know why I was doing okay! Lol.

Anyway, what I'm saying is that you've taken a great step in joining here for advice and encouragement. Ask anything you want and vent when you need to. Take care and I look forward to getting to know you better. XXXXX
 
Hi ChrisR. Welcome 🙂

You sound just like me (except 10 years younger 🙄) just over a year ago.🙂

With a lot of questions, trust in new ideas and dedication, you can get yoruself spot on diabetes wise. But you also sound like you're sufering a bi of burn out from fire-fighting your levels all the time with no real battle plan.

What regime are you on and are you under a hospital clinic or GP ?

Rob
 
Hi chris i find when i dont feel 100% is to do something for others like doning a charity bike ride or walk. I have in past done things for cancer,stroke and diabetes and others. It gives you something positive to go for. Good luck and wecome 🙂🙂
 
Thanks for the reply

I do (sort of) record my bg readings, insulin and food, though I know thats one area where Im too sporadic - I went for years and years without testing at all. In the main, Im between 8 -10 but often up to 12-14, particularly mornings. I take levemir and novorapid (4 a day)

Im gradually getting back into the habit of going to the doctor and hospital

I guess mainly, although I know (generally) about the right levels and such, Im still finding it hard to know my insulin and carb ratio. Or how best to work at it. Im still in that area of panic if I dont have the amounts I know, and just always seem to fail at knowing how much insulin per 10g carb.

And many other things, particularly I just feel lazy in the afternoons, early evening, but alive very late and very early. Though not "alive" enough for my other half, if you know what I mean
 
You should definitely ask what diabetes education courses are available to you then Chris - DAFNE is the main one but diferent PCTs may run their own. Not only would you get to learn proper carb counting, but also to mingle with other people in the same boat. 🙂 Your levels sound as though they could do with a bit of fine tuning to get them down in the 4-7 range pre-meal and down below double figures after eating. I find that I feel very run down if I get up into double figures. Do you know what your last HbA1c was?
 
Northerner said:
You should definitely ask what diabetes education courses are available to you then Chris - DAFNE is the main one but diferent PCTs may run their own. Not only would you get to learn proper carb counting, but also to mingle with other people in the same boat. 🙂 Your levels sound as though they could do with a bit of fine tuning to get them down in the 4-7 range pre-meal and down below double figures after eating. I find that I feel very run down if I get up into double figures. Do you know what your last HbA1c was?
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I barely even remember what an HbA1c is, let alone when I had one.

Im hopefully scheduled (finally - they took 4 attempts) for a course later this year.

I think you're right on the double figures. For years I was running mid teens, so originally, getting down to where I am was good, and still made me feel low and hypo because it was such a difference. But I think now Im used to those levels, they are now starting to feel high, so need to drop down again.
 
Ah, good to hear you are booked on a course 🙂 If you want to try an online carb counting course there is a very good one here:

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

I'd suggest getting an appointment for a review so that you know where you are starting from with stuff like HbA1c etc. 🙂
 
Hi Chris

Welcome 🙂

When we were trying to work out Rob's ratio's (Robster65) we wrote everything that went in his mouth (carb wise) down. Including 5g for a jelly baby or 15g for a mini can of coke. Also made a note of corrections.

We started by grabbing a couple of ready meals, not ideal but carbs are worked out on the packed 😱 The amount injected was written down along with as said any correction, and any exercise.

Then did it with other "home made" meals. Then it was a case of dividing the carbs eaten by the insulin injected.
It took about 2 weeks but we did see patterns form.
Did the same for breakie & tea and eventually it was working.

Hard work and a few LO's on the meter later and things settled down.

Obviously the big D likes to spit it's dummy every so often for random reasons generally when the wind is in the wrong direction🙄

But so worth it in the end, he's a happier person for controlling it rather than vise vera.

Good luck

Take Care


Sarah

ps sorry for long post hope it makes sence :confused: lol Long day & night!
 
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Hi Chris and welcome!!
I'm a bit late at logging on as I'm a night bird!

I note that a few posts you have mentioned your libido and being too tired for your o/h

...it struck me that on my DAFNE course it was discussed that men, after years of diabetes can suffer from autonomic neuropathy, one of the areas affected can be your sex drive and associated things required for 'that' activity...definately worth mentioning to your DSN or clinic as they maybe able to offer some help. It could also be if your running high that you are genuinely tired but either way the diabetes team can help
 
Just to tag on the end of Suze's post, the stress of trying to stay alive and healthy can impact on many other areas of your life which aren't considered essential for every day living. So you eat, sleep, and do all the other things you NEED to do but the pleasurable stuff goes out the window.

Once you feel in control and able to see why things are happening, you may feel better able to enjoy yourself.

Rob
 
Robster65 said:
Just to tag on the end of Suze's post, the stress of trying to stay alive and healthy can impact on many other areas of your life which aren't considered essential for every day living. So you eat, sleep, and do all the other things you NEED to do but the pleasurable stuff goes out the window.

Once you feel in control and able to see why things are happening, you may feel better able to enjoy yourself.

Rob
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Thanks Rob, yep didnt want to make it sound like that was a final and definate reason! Autonomic neuropathy sounds so scary. It could be as simple as you say!

Hope and I'm sure Chris, you have a partner who understands. My o/h is suffering from health anxiety and this has impacted on us in this way too. I know that my 'old rick' is still there somewhere and giving him the space and time he needs...
 
ChrisR said:
am always thinking about being up and about all the time, and do go cycling, walking swimming, but overall I feel unenthused and lethargic (if thats not contradictory).
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Hi ChrisR
I'm a newbie, now into my 3rd week type 2 but had to just say this was exactly as I was feeling and had been like this for months when I think back. I didn't have the energy or enthusiasm - very much unlike me. It was only when I couldn't last a day at the shops (as pathetic as that might sound, sorry) that it made me go to see the Dr finally. (Well that and my good pal "Twinkle" who'd been diagnosed 12 weeks prior to me.)
I just wanted to say hi and say that I can recognise those feelings from pre-diagnosis - I'm still up and down but I now know how to make things better and look forward to being back to my usual self.
Hope that all the advice on here so far gives you the chance to find out how to make things better for you and the "gloom" (which is how I saw it in myself) soon lifts.
 
Hi Chris, I know how you feel, I have had diabetes for 8 years and feel that I don't know anything! I have learnt so much here and have gone back to my nurses and doctor and said, I feel lost, can you spend some time going through things with me. I have a double appointment with my nurse soon and I'm hopefully going on a BERTIE course to learn carb counting. I also know how you feel about the libido issue, I don't know if there is a reason behind this for women though? It might be my anti depressants, I'm a bit ashamed to ask my doctor about it 😱
 
Hi Natalie

Depression is a huge factor in lack of sex drive for both men & women as is anxiety, stress etc... As well as that ever present "what if I drop low during " factor.

How long have you been on the Anti D's? They take some time to kick in if it's only been a short time. Like wise if you've been on them for a while it may be time for a change in tablet.

Easier said than done I know but Drs are there to help. If it is a side effect that isn't recorded for those tablets then they need to know for others in the future.

HTH

Sarah 🙂
 
Welcome to the forum Chris 🙂
 
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