Feeling fed up and at end of Tether ...

[GlucoseKnight]

I have been diabetic for 29 years, I have type 1, have 4 injections a day and try to do several blood tests a day but find it a struggle.
My hbA1c recently was 13.2 and has been like this for the last 10 years. No matter what I try and do with my insulin, I end up either having bad hypos or run extremely high with blood sugar readings of above 15.
I wanted to try the Insulin pump to ease having 4 injections a day but the hospital will not authorise this as they think I will be in danger. I have tried the insulin pump, tried 2 injections a day, tried the continuous blood glucose meters and I am now at the end of my tether.
I am emotionally up and down and my mood swings are sometimes unbearable for my partner who I love very much.
There are days I want to give up and have missed out insulin, I hate the injections even after this long! I know I shouldn't do that but I cannot cope and I know I am being stupid.
Is there anyone out there that feels this way. I battle with my Diabetes everyday and although I am doing my best to try and stabilise it, i keep hitting brick walls!
I just don't want to feel alone in this anymore, I am the only one in my family to have diabetes and all I get from them is you have to live with it!
I have been to counselling and a hypnotist but it didn't help, i feel if I don't do aomething I am going to end up with long term complications ... PLEASE HELP!

 

[neededthat]

hi there im not much use to you i only been diagnosed just over a year ago but i felt/feel very alone with diabetes my other half never really asks about how im doing or owt but then again i hate it when people ask me anyway think its because they don't understand anything about it, you've took the first step finding this place loads of people will give you support and info

 

[ham79]

Hi I struggle with the injections mainly because of the pain it causes me.
I am struggling with the side effects of neuropathy which has left me almost house bound I'm losing my mind. I'm so mad I'm angry and hate everything but my wife and kids love me and they keep me fighting .
Yes diabetes sucks but we have to keep going because it's worth it chin up bud don't let it beat you
All the best from Willie. (p.m me if you want to )

 

[GlucoseKnight]

Thank you for your comments, I really want to do something about it, I cant have my levels staying so high, I have a good relationship, i am 34 this year and I want a family, I wish I could find an alernative to the injections or atleast try the insulin pump ... I aprreciate anyones advice .. Thank You for taking the time to put your comments on my post, I know I have to keep fighting just wish it was easier

 

[CarbsRok]

y

 

[hismom]

the only thing I would add is portion sizes and types of food make a huge diffence. My son was diagnosed in october last year but with the right food and insulin intake we have managed to get a hb1ac of 5.6% last time. All of his food is wholemeal, wraps instead of bread,he has around 60 grams of carbs for each meal and 2 to 3 snacks of around 10 to 15 carbs inbetween. He is still in the honeymoon period so this might have made it easier I dont know. Also dont forget to eat low fat and low salt but do have the occasional treat to make live more liveable. I am still new to all of this but feel free to pm me if I can be of any help.



steph

 

[Dillinger]

Hi GlucoseKnight,

I'm a Type 1 diabetic and I found that the best control I've ever achieved was gained by going on a low-carb diet, inspired by many of the very helpful posters on here. Have a look at the Success Stories bit of the site and see if that will inspire. I would also suggest buying the Dr Bernstein Diabetes Solution book; it makes a lot of sense.

As you know you've really got to get your HbA1c down, but it is possible and control is achievable.

Don't give up and don't stop taking your insulin!

All the best

Dillinger

 

[GlucoseKnight]

Thank you once again for your replies to my post.
I haven't tried the Insulin pump, my apologies, I should have put I tried the Insulin inhaler but due to the lack of blood tests I could not give a clear indication of whether this was working for me. They stopped producing the inhalers due to the funding costs.
I was brought up with Diabetes - counting carbs and so I have a good sense of the carbohydrates in foods and still have my old Carbohydrates books. I adjust my insulin accordingly but this doesn't seem to help me much at the moment, doing no exercise also doesn't really help either.
I used to be on Pig insulin when I was younger and I dont think this caused me any problems, as far as I am aware, my blood sugar levels were never this high but for some reasons they changed me onto human insulin and the last 10 years have been dreadful. I am on Lantus and Novorapid at the moment and I am sure I have a resistance to this.
I am keen to get my levels sorted, I am 34 this year and want a family which I have been told at the moment is impossible. I am trying to remain positive but its hard. My Hospital are trying to see me on a monthly basis to help me out but I feel I am just going over the same things and feel very demotivated going. I would love to try alternative methods but the hospital aren't really listening to my needs at the moment and I am going further into depression with it. Anti depression tablets on hide the emotions, they don't help you face them or overcome them .. thats why I need help.
I am willing to try anything, I want my sugars to be under 7 and I am willing to listen to others who are facing this, have been through it or can offer me any advice. Once again Thank you for listening.

 

[CarbsRok]

y

 

[LittleSue]

Although my HbA1c wasn't as high as yours, I thought I'd never get good control. The DAFNE course made a big difference. My problems were a combination of hormonal variations, being given wrong info in the past and told not to correct highs, and probably never having got my basal right. DAFNE got the basal right and corrected wrong info, the resulting improvement allowed the hormonal variations to be seen.

DAFNE needs more tests and probably more jabs, but boy its worth it. Testing is essential - it's a tool, not a punishment. Testing isn't an issue when you feel you can influence the results

See if you can get onto a DAFNE course or similar, or get your GP to refer you to a different clinic where they know about DAFNE even if you have to wait a while for the course. DAFNE-trained DSNs often introduce elements of DAFNE bit by bit and will tend to look at your doses/carbs in a different way.

 

[GlucoseKnight]

Thank you once again for your comments, it helps to know what other Diabetics think and ways in which you have gained control of your diabetes.
I know I am being stupid with my control and I have to do something, I am going to speak to my diabetes specialist when I go back in March and suggest the animal insulin again and I will aim to do regular blood tests in order to get me back on form. I will let you know how I get on.
All your comments and suggestions are really helpful, sometimes it takes someone is going through Diabetes themselves to make me realise how stupid I am being and how I can sort this out before its too late. thank you.

 

[noblehead]

Thank you once again for your comments, it helps to know what other Diabetics think and ways in which you have gained control of your diabetes.
I know I am being stupid with my control and I have to do something, I am going to speak to my diabetes specialist when I go back in March and suggest the animal insulin again and I will aim to do regular blood tests in order to get me back on form. I will let you know how I get on.
All your comments and suggestions are really helpful, sometimes it takes someone is going through Diabetes themselves to make me realise how stupid I am being and how I can sort this out before its too late. thank you.

That's a good positive response, I think in time you will overcome your difficulties and get back on track.

Good luck to you!

Nigel

 

[tonyrees68]

hi chin up mate you will get sorted
try to get a Daphne coarse or an Insight course and stick with it things have changed a lot over the last 5 years and have really inproved
The thing i liked about the Insight course is that you are in a group of about 6 people who have all the same problems as you and you can discuss the probs you are facing and the nurses who run the course then adjust your insulin/change the insulin to suit every individual needs i was on the course just 3 months ago and its changed my life no hypos any more and a feeling of well being which is a fantastic feeling that i havnt had in a long time stick with it mate you wil be ok
tony

 

[GlucoseKnight]

I think I should try the course you have mentioned, tried to adjust my isulin last night by only 2 units and I had a really bad hypo at 4am this morning and my blood sugar levels have been high again all day (in the 20's).
Going to see about changing my insulin aswell. But going to try and get on this course, your comments are all positive about this.
Thank you everyone

 

[mumofteendotter]

My 14 year old daughter has had Type 1 for many years and her HBA1C is currently 13ish so you are not alone. We have a new (male) consultant who is helping us out at least once a month. She has to do a test before every meal and snack which is a bit of a pain for her but we are working as a team to see where things can be improved. I bought her an UltraSmart meter which can give us lots of data to work with. She is on Levermir as Lantus stung too much and Novorapid. Each month there is an improvement in her HBA1C and although most of her readings are in the 12 to 20 range, there are fewer off the scale ones.

What I am trying to say is that you are not alone in not having great control and feeling fed up, but you (and only you) can do something about it. Set yourself an HBA1C goal, collect the blood test results, do your jabs and ask your diabetic team for help. Tell them how fed up you feel and that you want help improving your HBA1C.

Best wishes

 

[jono1970]

Hello mate,

You are not alone. I have had type 1 for 7 years now and just cannot regulate my BG to balance no matter what I do. My hba1c was 15 when I last had it checked over a year ago. I also have sleep apnea, IBS, taking mood stabilers and antipsychotic medication. Most of the time I am so tired, depressed and suffer from muscle weakness and stiffness. Some days I just lose the will to continue.
I have made an appointment to see my nurse in March to try once again to get beyond this. Would hi BG cause muscle weakness/stiffness?
I would love to try a pump but my request was refused a couple of years ago - might ask again.

I used to inject 4 times a day and take a shot of lantus at night. I couldn't get on with so many injections so was put on novamix twice a day.

jono

"To know the road ahead, ask those coming back"

 

[GlucoseKnight]

Thank you for your response, it is helpful to know that I am not the only one struggling with the blood glucose levels,I am working to try and sort this out. I have also advised my specialist how I am feeling in the hope that I can get this sorted out now rather than later. It is helpful to know how other people deal with this and how they cope. Thank You again

 

[donnellysdogs]

I have been diabetic 25 years. T1. **** HBA1c's for many years, but have been superb for past 5 years.

I am on lantus, and tried to get my consultants and gp's to let me change from night dose to morning dose. In the end I did it myself, and have not looked back. Night hypo's stopped, and insulin doage for lantus has gone from 31 down to 18 and will be lowered again in next few days. Daytime levels much better too.

My brain was totally messed up by taking statins that consultants and gp's prescribed because I am type 1 , not because my cholesterol levels were bad. I am 46 now, and I lost almost a decade of my life to this drug with depression, anaemai and absolute chronic muscle pains. I again took myself off statins. (GP said it coould not be statins because I had been on them too long). My brain has completely changed, I actually feel 21 again. My muscle pain has diminished immensly, I though I was 100% better, but having done 5 days constant gardening I have a little hip ache back, but nothing compared to needing walking sticks and wheelchai 3 months ago.

Has anybody been pu on statins or taking statins, if so please be aware that they can cause havoc with brain and body

 

[cugila]

Has anybody been put on statins or taking statins, if so please be aware that they can cause havoc with brain and body

Hi DD.

I think I get the picture after reading this and some of your other posts, you don't like statin's......
I can understand that. You appear to have had a shocking time on Simvastatin. That is well documented and I don't think there are many who wouldn't agree it is one of the cheapest and probably least effective drugs available.

What must be remembered is that there are other statins available, which all work well and do not have the side effects of Simvastatin. So nobody has to remain on a drug which is not effective or has massive side effects. They need to discuss this all with their GP and get something else prescribed.

I was on Simvastatin many years ago and had side effects, nothing like you appear to have suffered, but significant all the same. So, I went to my GP and talked about this.....result was I was put onto Atorvastatin. Never looked back since. No side effects, Cholesterol all started to drop and levels are now 3.2, everything else all in order. Now if that worked for me I wonder why those that had problems with Simvastatin just didn't do what I did and changed the medication.

There are always going to be those that cannot get on with a particular drug but that doesn't mean to say that ALL statins are bad and that no one should touch them. Some of us have no choice and the drugs also work well without any problems for the majority of us.

Ken

 

[moonstone]

Would hi BG cause muscle weakness/stiffness?

Yes, it's a side effect of high BGs. Before diagnosis I already had back problems from an accident anyway and no matter what I did, my muscles were wasting away, plus spasming, plus cramping, plus being stiff and painful. I was in constant pain in various places. I was in a sling 3 months before diagnosis, God knows what I did to my shoulder but it was all muscle-related. I also had a week off work because my neck went into spasm when I reached down to turn off my alarm clock. My osteopath was nagging me to exercise because I was wasting away, but I couldn't understand why it was happening cos I wasn't doing anything different (but of course, my blood sugars were on a long, slow march upwards thereby killing my muscles). Within 2 months of being on insulin and getting decent BG levels again (thanks to the honeymoon period) my osteopath and I agreed I had someone else's back! Keep the faith - you can do it Also with the sleep apnoea - my GP told me today I've got it - I've looked around t'interweb and discovered propping yourself up at 30 degrees tends to sort it out, which makes sense given it doesn't tend to happen to me when I have a certain configuration of pillows... failing that can you get a cpap machine?